Greater Manchester and Cheshire	Cancer Network	Cancer Network NORTH TRENT

Holistic Needs Assessment Process

Information & Training Manual

Please return to :- Dept.

Latest Version = Version 01/08

Last update: March 2009

Contents

SECTION	PAGE

1. Holistic Needs Assessment Process - Introduction 5

2. The assessment tool and how to use it	15

3. A conversational style of assessment	23

3.1 Introduction to a conversational style of assessment	24

3.2 Physical Needs	25

3.3 Psychological assessment	33

3.4 Spiritual Religious Issues	41

3.5 Independence and Activity	45

3.6 Family and Social Concerns	49

3.7 Treatment Issues	53

3.8 Assessing and Responding to Information Needs	57

4. Action planning	63

5. Implementing a Holistic Needs Assessment Process 67

Appendix I – SPARC Tool

Appendix II – Action Plan

Appendix III – Roles of AHPs and other support staff

Appendix IV – Mini Mental Test

Acknowledgements

Work to develop a Holistic Needs Assessment (HNA) process for the North Trent Cancer Network (NTCN) started in June 2007 with a workshop event attended by over 40 health professionals. Task groups were formed to take forward specific topics. Initial meetings were to discuss selection of an appropriate holistic tool. The production of a manual to support staff in the HNA process was then started and a writing group formed. A further event was held in 2008 to give information and engage those who are likely to be assessing patients.

The North Trent Cancer Network would like to thank the Network Supportive & Palliative Care Group who monitored the work of the sub groups and all members of these groups and other contributors.

Particular thanks go to:-

Sam Ahmedzai - Professor of Palliative Medicine, for chairing the HNA task group and for providing information and advice about the SPARC tool developed in Sheffield by his team.

Kevin Bolster – GP, who in the role of clinical lead for the HNA project has chaired many of the groups and encouraged the engagement of staff from across the network.

Lin Jameson – Network Coordinator for the HNA project, for her commitment, organisational skills and encouragement of all involved.

The user representatives involved in groups and events:-

Marie Harris

Cath Sorsby

Shirley Harvey

Colleagues involved in the task group/sub groups and focus group

Joan Ashton	Coordinator Chaplaincy Services,	Rotherham
Lesley Barnett	Lead Cancer Nurse	Doncaster
Simon Bell	Macmillan Patient Information & Support Manager	NTCN
Katharine Boon	Clinical psychologist	Rotherham Hospice
Janet Boswell	Macmillan Specialist Palliative Care CNS	Bassetlaw PCT
Jane Bray	Nurse Lead Hospice & Palliative Care	Bassetlaw Hospice
Trish Corcoran	Nurse Consultant, St Luke’s Hospice	Sheffield
Keith Doran	Consultant in Palliative Medicine	Barnsley
Kathryn Dykes	Clinical Psychologist	Barnsley PCT
Carole Fairbrother	Macmillan specialist social worker in palliative care	Barnsley
Anita Gill	Macmillan CNS Palliative Care	Barnsley
Suzann Giller	CNS Palliative Care	Chesterfield
Rebecca Haines	Consultant Clinical Psychologist	Sheffield
Judith Hartley	AHP Lead	Doncaster
Stacey Heritage	Sheffield Citizen Advocacy – Speakup	Sheffield
Gill Horne	Clinical Services Lead/Matron	Rotherham Hospice/Community
Rachel Holt	Principal Clinical psychologist	Chesterfield
Karen Ibbotson	Brain CNS	Sheffield
Tim Plant	Chief Executive Cavendish Centre	Sheffield
Andrea Rose	Modern Matron St. John’s Hospice	Doncaster
Janet Ryles	Macmillan CNS Head & Neck Cancer	Doncaster
Sandra Salmon	Macmillan CNS Palliative Care	Doncaster
Jo Statham	Clinical Psychologist	Sheffield
Dawn Thomas	Palliative Care Services Manager,	Barnsley

Holistic Needs Assessment Process

1. Introduction

Holistic Needs Assessment Process

Background

The requirement to improve the process and content of patient assessment stems from the NICE (2004) Guidance on Improving Supportive and Palliative Care for Adults with Cancer. This document addressed the nature of the care that should be provided to help patients and their carers to cope with cancer and its treatment throughout their experience of the disease. Further scoping work was undertaken and as a result of this, a report to the Cancer Action Team; Holistic Common Assessment of Supportive and Palliative Care Needs for Adults with Cancer was published along with assessment guidance. This report was endorsed by the Cancer Networks nationally, and it was accepted that many supportive and palliative care needs are still unrecognised and unmet, for many patients and their families.

The University of Sheffield has designed an assessment tool ‘Sheffield Profile for Assessment and Referral to Care’ (SPARC), in collaboration with Clinicians within North Trent, and the Network Supportive and Palliative Care Group (NSPCG). This tool is designed to be completed by the patient (with support from carers if needed) and forms the starting point for the holistic needs assessment process. SPARC is a screening questionnaire that explores a variety of issues and may help the patient / carers to reflect on their needs. The issues covered in the questionnaire fall into the following domains:

Physical

Psychological

Religious/spiritual

Independence/activity

Family/social

Treatment

Information

Communication

Use of the SPARC tool provides the person making the assessment with the ideal opportunity to ask the patient ‘’what is concerning you most’’ in the knowledge that they will have been encouraged to think about this question through the questionnaire. This will hopefully be the beginning of a conversation that will have the person’s concerns at the centre. It is this concept that is at the heart of the process.

The Process

The process can be divided into 3 sections:

SPARC – The patient completes the questionnaire and reflects on their concerns (See section 2).

Conversation – The assessor explores patient concerns in enough depth to be able to decide what action to take (See section 3).

Action planning – The assessor agrees with the patient what the main concerns are and develops an action plan which may involve signposting, referral or direct action. This is simply and concisely recorded so that the patient can have a copy and the assessor can share the information with other relevant professionals (See section 4).

It is hoped that through this process being used across the cancer network, more people living with the consequences of a cancer diagnosis will have their needs recognised and will be supported in meeting those needs.

The Manual

This manual is designed to be a resource to the person and teams wishing to undertake holistic needs assessments. The following are some key points about the manual:

It seeks not to be prescriptive but to provide advice and instil confidence in the user.

It is designed to be a reference guide rather then a ‘crib sheet’ to be used in front of the patient.

Anyone undertaking training in use of the Holistic Needs Assessment Process will receive a manual. It will be used as a starting point for training and participants will be encouraged to customise it with anything they feel may be of use in the future.

It is anticipated (and hoped) that the manual owner will populate it with useful local information and make it their own.

It contains support in use of the SPARC tool, conversational style assessment and action planning as well as practical advice to managers about getting the process up and running.

FAQs

Many of the answers to these questions are made with direct reference to the Cancer Action Team’s guidance on Holistic Needs Assessment.

Why bother with a Network approach to this issue?

Consistency – Cancer care often involves patients being seen and treated in different locations and so having one recognised assessment process will aid transfer of care between teams.

Avoiding repetition – No-one wants to have repeated assessments and it is hoped that having one recognised assessment process will encourage healthcare professionals and teams not to repeat assessments unnecessarily.

Sharing learning and good practice – The Cancer Action Team have produced guidance on Holistic Needs Assessment but there is still plenty of scope for interpretation. This is an opportunity to get some consensus across the cancer network and work together towards a shared goal.

It is unlikely that there could ever be complete agreement about the detailed wording of a tool or supporting documents but it is hoped that all those wanting to undertake holistic needs assessment can agree that it should be ‘patient focused’ and ‘led by patient concerns’. The nature of what we are recommending should mean that we can unite around the concept of a patient centred conversation and that the subtleties of the tool or other associated resources will become less significant.

Who should be assessed?

Any patient with a diagnosis of cancer could be offered this assessment.

In the first instance it is not anticipated that the tool will be used with anyone other than adult cancer patients. However, in the longer term it is hoped that the process could be of use in other patient groups.

The guidance is for the assessment of patients’ needs and has not been designed to assess the needs of carers. However, it is recognised that carers’ needs might be identified during the course of the patient assessment, and this may raise a need for further assessment and action.

Who should carry out an assessment?

It is anticipated that in the future a variety of health or social care professionals may be undertaking holistic needs assessments, although in the first instance we expect that senior MDT members / nursing staff will be the likely candidates.

The patient’s healthcare team at each ‘key point’ is responsible for ensuring that the assessment takes place at that key point.

Teams should use the following principles when selecting an assessor:

The assessor should be a professional who has good basic communication skills and is competent in the use of the Holistic Needs Assessment Process. The cancer network will be providing training for those wanting to undertake this kind of assessment.

The assessor should have access to up-to-date information about local service providers, referral criteria and support services.

The selection should be in accordance with any patient preferences for communicating with particular professionals (wherever possible).

When should assessments take place?

Assessment should be an ongoing process throughout the course of a patient’s illness. Structured assessments should be considered at each of the following key points in the patient pathway. This list should be seen as guidance only and there are a number of reasons why an assessment may or may not be appropriate at a particular time (see below):

Around the time of diagnosis

Commencement of treatment

Completion of the primary treatment plan

Each new episode of disease recurrence or major progression of disease

When referring / handing over care to another provider

The point of recognition of incurability

The point at which end of life care begins (recognition of advanced, progressive and incurable disease)

The point at which dying is diagnosed

At any other time that the patient may request

At any other time that a professional may judge necessary

In some cases, key points may follow one another quickly in time and in this situation, unnecessary repeated assessments should be avoided.

At some points it may be unnecessary to undertake an assessment because the patient is already being assessed using another tool e.g. The Liverpool Care Pathway during the dying phase.

It is acknowledged that some key points are self-evident while others require professional judgment.

Whilst best practice would suggest that a full assessment should be completed in a single session, this might not always be practical or appropriate. The assessor should follow these principles:

the timing and pacing of assessment is patient sensitive

priority needs are identified at an early stage

the whole assessment is completed within a reasonably short time

It is worth mentioning that sometimes people will be too poorly to complete an assessment and of course in this situation it would not be appropriate to do so. However, we should not make this presumption without good evidence. Someone may have very advanced disease but still be able to and keen to have their needs assessed. In some situations it will be appropriate for a carer to complete the questionnaire on the patient’s behalf, while this method has limitations, it is better than not conducting an assessment at all.

Where should an assessment take place?

An assessment can be carried out in any physical setting that ensures comfort and privacy. The place of assessment will be determined by the patient’s care setting at that key point in their pathway. Where a third party or carer is supporting the patient in completing the SPARC questionnaire they may need to be provided with adequate privacy to be able to do this.

What do I do if the patient doesn’t want to talk?

This may well happen from time to time and needs to be handled sensitively. The patient can be reassured that this is fine and that there is no obligation to engage with the process. It may be helpful to:

Confirm that they understand the purpose of the process – It is not uncommon for people to be fearful of something they don’t fully understand. A simple explanation that the process is about their concerns and how we might best support them may encourage engagement.

Explore reasons behind them not wanting to talk e.g. ‘’Is there something about the process that is worrying you?’’

Ask if there is someone else who they would like to be involved. Sometimes people simply don’t want to talk themselves but are happy for a relative or carer to help them.

It may be worth asking if they would be happy to look at it again at a later date. It may simply not be the right time.

If the patient really doesn’t want to engage with the process then this must be respected. It may still be possible to pick up on specific needs and offer support and signposting where appropriate so do keep the persons potential needs in mind when dealing with other aspects of their care.

What do I do with the results?

This will be dealt with later in the manual (See section 4).

How will the assessment be recorded and stored?

This will be dealt with later in the manual (See sections 4 and 5)

What about other assessment tools / processes?

Where there is clear overlap with another tool, unnecessary repeated assessments should be avoided.

What do I do if I come up against significant barriers to communication?

There is no easy answer to this question. Try to keep the aims of the process in mind and feel free to be creative and resourceful. If a particular aspect of the assessment is proving difficult then see if it is possible to find an alternative approach. If appropriate, enlist the help of a relative or carer as they may have an idea of what would be the best solution. See the following paragraphs for some guidance relating to specific situations.

Barriers to communication

The following paragraphs will give you some general guidance about how to approach specific situations that you may come across. In all of these situations it is worth being particularly aware of the environment where the SPARC questionnaire is being completed and the conversational assessment is taking place. In all these situations, additional privacy may be required, especially if a third person is involved. You may also require extra time to carry out these assessments and so it is worth factoring that into your plan / clinic.

Dementia

Dementia can cause a variety of communication challenges with varying degrees of severity so it is impossible to deal with every potential scenario. However, some of the following principles might be helpful: -

Presume that the person does have the ability to take part in the assessment and make sure you engage them in conversation from the beginning.

If there is a history of dementia it may be best to involve the main carer who can verify what is being discussed and add further detail where required.

Even if a carer is involved in the conversation it is appropriate to address the patient directly and show respect for any opinions expressed. Remember, if someone has dementia it doesn’t mean they have nothing to contribute or communicate.

A patient may express a view that seems ‘unwise’ or different to your own but this doesn’t necessarily mean they are confused. These two things can be hard to distinguish but carers can often assist with this.

The guidance associated with the Mental Capacity Act can help with issues of capacity and decision making.

Language barriers

In our multicultural society it is not uncommon to come across patients who don’t understand or speak English and the SPARC tool is not currently available in other languages. There are 2 ways to approach this situation: -

One approach is to use an interpreter and all trusts should have policies and procedures regarding use of interpreters. When using an interpreter it is important to maintain engagement with the patient by facing them and using eye contact, even when the interpreter is translating. You may want to utilise the interpreter to help the patient with the questionnaire or work through the questionnaire with the patient yourself (with support from the interpreter).

It is possible to use a family member, friend or carer but it is important to be aware of the potential issues with this. Some patients will not feel able to be honest in the presence of someone who knows them. There is also the risk that the family, friend or carer will not translate exactly what is being said and this may give an inaccurate picture of the patients concerns. However, it is not always possible to get interpreters and so you may have to make a judgment as to whether it is appropriate to use someone who knows the patient.

If you are giving any written information and the information isn’t in the persons own language, it is worth confirming whether they have someone who can help them to understand it fully.

Hearing impairment

Hearing impairment is common but obviously varies in its severity. The following principles may help you in your communication with someone who is hearing impaired: -

Don’t shout

Speak loud and clearly

Come closer to the person

Make sure your face is in good light

Get the persons attention before starting to speak

Setting the context may help e.g. ‘’We are now going to talk about….’’

Check they have heard and understood e.g. ask them to repeat back to you any key information

Some peoples hearing impairment is so profound that they lip read or use sign language. In this situation it is best to ask the person what would help them to be able to participate in the process e.g. they may need someone to sign for them.

Visual impairment

The degree of visual impairment may vary from acuity problems to complete blindness. Someone who is profoundly impaired may require assistance from a carer, family member or friend. The following principles may be helpful when meeting with someone who is visually impaired: -

Don’t shout (it is easy to do without realising and it doesn’t help!)

Don’t sit with the sun or a bright light behind you

If you are producing any written information and you are able to increase the font size, then use 16pt or greater

If the person requires information and there is an ‘information centre’ available then make use of it because the centre may be able to provide information in different formats.

Learning Disability

As with many other disabilities, learning disabilities can vary in their severity and the way in which they affect an individual. The following principles offer some general guidance: -

Speak with the patient and their carer about what would work best to make the assessment manageable and meaningful

Ask about things that may cause anxiety or upset so that these can be avoided

Allow extra time if possible

Try and avoid long waits e.g. put patient early on clinic list

Engage with the patient even when the carer is having to provide a lot of the information

Use ‘information centres’ which may be able to tailor information to the patients needs

2. The assessment tool and how to use it

The assessment tool and how to use it

Introduction

One of the key challenges in undertaking a holistic needs assessment is encouraging and supporting the patient in identifying the things that are concerning them most. People will often tell us only what they think we want to hear, or what they think we can help them with, and so we don’t get the whole picture. It is for this reason that an assessment tool can be so helpful.

The assessment tool is designed to be completed by the patient and preferably with enough time for them to think a little about the questions. It is an opportunity for the patient to reflect on their own needs and to some extent prioritise them. The assessment tool can also give ‘permission’ to patients to raise particular concerns where they may have felt that the concern was not valid enough to be discussed or was too embarrassing.

Completion of the tool is only the first step of the holistic needs assessment process but is key to supporting the patient in setting the agenda for the rest of the assessment and so communicating to the assessor what matters to them most. It is the ‘springboard’ to a conversation that will hopefully enable the patient to share their story.

The project team chose to use ‘SPARC’ as the tool for this holistic needs assessment process for the following reasons:

It is a ‘holistic’ tool and has been identified as such by the UK Kings College Guidance on Holistic Needs Assessment.

It has been well tested with patients and was generally considered to be acceptable and easy to complete

There is local expertise in its use and evaluation through the team that devised it and have sought to research and improve it

SPARC – A bit of background

What does it stand for?

Sheffield Profile for Assessment and Referral for Care

Why was it developed?

Elizabeth Clark Charitable Trust (Sainsbury Family Trust) approached the University of Sheffield to ‘improve access to palliative care’

The Problem -

Equity of access to palliative care is a public health problem

Identifying which patients to refer and when to refer is an individual issue

The Solution -

Develop a screening instrument to apply to individual patients

Make this freely available to all non-specialists and to potential patients and their carers.

How was SPARC developed?

Study 1: Item generation: Exploring reasons for referral to specialist palliative care

Study 2: Question development: Developing items into questions

Study 3: Pilot study: Testing the questions and response formats in practice

Study 4: Item analysis and reliability testing

Study 5: Validity testing: Preliminary assessments of validity

What does SPARC now contain?

45 questions divided into different domains

Domain	Number of questions	Response type
Physical symptoms	21	Distress / Bother
Psychological	9	Distress / Bother
Religious / Spiritual	2	Distress / Bother
Independence / Activity	3	Distress / Bother
Family / Social	4	Distress / Bother
Treatment Issues	2	Distress / Bother
Information / Communication	3	Yes or No
Personal affairs	1	Yes or No

The Distress / Bother is rated on a scale of 0 – 3 using a tick box format

The project team has added a single measure of global distress (0 – 10 vertical numerical scale) in addition to the questionnaire. This is quick to complete and gives a measure of global distress that is easy to repeat and compare.

Consideration has been given to when the patient should put their response on to the scale. The measure of global distress is currently positioned before the SPARC tool, to try to capture the patient’s initial gut response. However, if the patient prefers to respond having completed the SPARC questionnaire and reflected on their own needs, this option is open to them.

This measure has been validated as part of another assessment tool (the Distress Thermometer) and has been successfully used in a variety of settings.

What exactly do consumers think of SPARC?

The North Trent Cancer Research Network – Supportive and Primary care Oncology Research Group (SPORG) set up a project to investigate consumers’ views of SPARC. The aim of the study was to examine the views of consumers regarding SPARC used as an assessment of need for supportive care.

99 local user groups were identified from internet searches, local directories and health service databases

135 questionnaires were returned, representing 38 user groups

• 93% of respondents reported SPARC easy to understand and fill in

• 60% found it relevant now

• 47% envisaged it relevant in the future

• 12% found some questions too sensitive

Comments were analysed and five themes emerged:

• Relevant to a wide range of diagnoses

• Easy to understand

• Quick to fill in

• Relevant for professionals. But will they use it?

• Questions were ‘sensitive’ – but worthwhile

How has SPARC been validated?

Throughout its development, SPARC has been tested and piloted with both the patients who are its target group and also the professionals who are likely to use it with patients. During an early stage, a cognitive interviewing process was used to identify items which were confusing, redundant or missing. An important stage in the development was obtaining the feedback from North Trent patient groups on the final instrument.

In 2007/8, SPARC was validated psychometrically in a sample of 327 cancer patients attending Sheffield hospitals, this included in-patients, out-patients and patients attending day wards, at all stages of disease. SPARC was compared with the EORTC QLQ-C30, Brief Pain Inventory and the Multidimensional Fatigue Scale. Overall, SPARC was preferred over the EORTC QLQ-C30. The results showed that SPARC is sensitive, reliably identifies patients’ concerns compared to standard instruments and is popular.

How do we enable patients to fill in a SPARC questionnaire?

There is some flexibility with this. The key thing is that wherever possible, patients are afforded time prior to their assessment to complete a questionnaire and reflect on their own concerns.

As an example, here are three ways in which this could be facilitated in the hospital setting, but you may want to come up with your own system which is appropriate to the setting in which you work.

The questionnaire could be sent to the patient for them to fill in at home prior to their appointment

The questionnaire could be given to the patient at one appointment for them to take away and complete prior to their next appointment

The questionnaire could be given to them on arrival at their appointment for them to fill in whilst in the waiting area

It may be helpful to include a short covering letter with the questionnaire that explains why it is being given out. This can help to allay any anxieties about what it will be used for. We have included a template letter in section 5 of this manual.

What do I do with the completed questionnaire?

The key to answering this question is to go back to the introduction to this section where we talked about the questionnaire being ‘’the ‘springboard’ to a conversation that will hopefully enable the patient to share their story’’. With this in mind it is advisable to start with an open question that allows them to share how they are doing (e.g. “I have had a look at your questionnaire. Are you able to tell me what is concerning you most at the moment?”).

It is recommended that you have a quick look at the questionnaire, either before you see the patient or before you get the conversation started. This may only take a few seconds but will allow you to build up a quick picture of what is going on. The patient will probably be reassured that you have looked at the questionnaire and are taking an interest in their concerns.

If a question is left blank it may be worth checking whether the patient needs any help or explanation with it e.g. “I notice you left this question blank. It is fine to leave questions blank but I just want to check whether you need any help with it or further explanation?”

If the whole questionnaire is left blank then you would want to address this issue gently using the ideas in section 1 (FAQs - What do I do if the patient doesn’t want to talk?). The patient may be very willing to talk but the issues described probably need exploring before continuing.

The following chapters will support you with assessing the patients concerns in more detail so that you can then make a decision about how to support them with their needs.

What about the scores?

It is important not to make the scores more important than they are. They can help both the patient and yourself to prioritise concerns but there are some things that the scores will not do:

A particular score will not give a clinical diagnosis

Scores should not be added up to give an overall score

Lower scores can’t necessarily be ignored

A score of 0 suggests there is no concern in this area

A score of 1 should probably not be given high priority especially if there are a lot of other higher scores. However, if it is one of the higher scores it may be appropriate to explore the concern. It may also be appropriate to explore scores of 1 if they have been present on previous assessments.

A score of 2 or 3 should be explored in more detail. This can be difficult if there are a lot of 2’s and 3’s. In this situation you may want to explore the patient’s greatest concerns first and arrange to see them again to continue on the assessment or it may be possible to group some concerns together and offer appropriate support based on a less detailed assessment. There is no right answer but remember that the aim is to assess in enough detail to be able to offer the right support, signposting and referral.

A score of 3 should be regarded as potentially an urgent request for help and patients should not leave the assessment process without these needs being addressed. It should also usually lead to a date being set for some form of follow-up.

An appropriate response to a completed SPARC questionnaire will take into account the individual scores, the patients own prioritisation, the chronicity of any concerns and the overall context (but not the overall score).

Some patients will present with many problems whether they are using SPARC or not, and it is always a challenge to know how best to support them in the time you have. This involves good communication skills and is often helped by a good knowledge of local services. Using this holistic needs assessment process will not solve all the problems but may help you to support the patient in prioritising their concerns.

The measure of global distress

This simple tool (measured from 0 to 10 on a single vertical numerical scale) gives you a quick sense of how distressed this patient is by their current situation. This can be useful in 3 different ways:

If the global rating is greater than 4 this should prompt exploration as to why. Usually this will be clear from the rest of the self-assessment, in which case the assessment can proceed as usual. Occasionally the global rating may be higher than expected given the concerns highlighted by the patient and could suggest undisclosed concerns. These could be screened for using a simple open question like ‘‘I notice that you rated your current distress as quite high. Is there anything particular that is bothering you at the moment?’’

On a repeat assessment, it is possible to compare the score from the last assessment and pick up any significant changes regardless of whether the other details of the assessment have changed or not. An increase of 3 or more is a significant increase and should prompt further exploration.

The global rating may be low or have fallen since the previous assessment and this would obviously be encouraging. However, if this is incongruous with the rest of the patient’s assessment, it may be worth clarifying how difficult they are finding things just to make sure you are getting a clear picture of the patients concerns and distress.

Again, it is important to understand that this global measure of distress does not give you a diagnosis but can help you to build a comprehensive picture of a patient’s current concerns.

3. A conversational style of assessment

A conversational style of assessment

Introduction

This section is divided up into chapters that correspond to the different domains within the SPARC tool. The colour coding will hopefully help with referencing.

The following chapters aim to support the assessor in gaining enough information to be able to offer the patient appropriate support and develop an action plan. The chapters contain guidance on how to explore issues raised by the patient in a little more detail. This may include suggested questions to ask or suggestions on question sequence. These chapters will also offer some advice on what to do with the information gathered and who might be best placed to support the patient with their needs. Although most chapters will have a ‘What do I do now?’ section with guidance about supporting the patient, it is recommended that you leave the ‘action planning’ until you have explored all the patient’s concerns and are drawing the assessment to a close. Action planning is dealt with specifically in the next section (Section 4).

Although this section is divided up into chapters this does represent an artificial division that doesn’t exist in real life. It is worth bearing this in mind when helping the patient to explore their own needs. For example, it may become clear that a physical symptom is intimately linked to an emotional issue or practical concern and so it would be appropriate to explore these in reference to one another rather than in isolation. This can be challenging but is important if we are to properly understand the patient and their needs.

The project team has purposely avoided strict protocols as these are likely to make assessors feel constrained and may cause problems locally if they are not consistent with local agreed protocols.

The vision for this section is for it to be ‘personalised’ by the assessor using local information and referral protocols. There are spaces between the chapters to facilitate this and it is hoped that the assessor will feel free to ‘make it their own’. We expect that assessors will identify any local directories of services and put a copy in the manual for their use.

The information and suggestions contained in these chapters should only be seen as a guide and not a rule book. Many professionals have excellent communication skills and will have developed their own style and approach to assessment. This section is not designed to override these skills but to complement them.

3.2. Physical needs

Physical needs

This chapter will consider how to explore issues raised by the 21 Physical symptom items in the SPARC tool (items 2 – 22).

Questioning sequence

The suggested sequence of questions below can be applied to all of the physical issues and will enable information to be gathered in a consistent way, ensuring that all important information is elicited. This is only one way to explore the patients concerns but many people do find it helpful and within a short time the sequence becomes quite natural and easy to remember.

Elicit a description of the problem: onset/cause, duration, intensity, consistency, nature and rate of change

Ascertain the effect of the problem upon the patient’s normal activities / function

Elicit the history of management of the problem, including treatments tried, use of equipment, and extent of self-care

Review with the patient whether management / treatment is helping and whether past treatments have failed or caused troublesome adverse effects.

Ascertain further needs

Explore related fears or anxieties

Prompts and additional assessment methods

The following table may suggest conversational ‘prompts’ for each physical symptom which are designed to further help the assessor. These prompts are in addition to the questioning sequence above and are to support the assessor in gaining a better understanding of a particular physical symptom. Prompts should be used judiciously, not exhaustively, and they should not be used as lists of sub-items for assessment.

The table over the page also contains any additional methods of assessment that an assessor may want to consider using.

Table - Items 2 - 22

Some items have no suggested conversational prompts or additional methods of assessment.

Item No.	Item	Conversational prompts	Additional assessment Methods and further things to consider
2	Pain	Discomfort	Consider ‘PQRST‘ question sequence. Provokes “what makes it better / worse “ Quality “What it feels like?” Radiates, “Does it move any where?” Severity, “How bad is it?” Time, “How long does it last / how long have you had it?” Upset – “Have any previous treatments upset you?
3	Loss of memory	Disorientation, confusion, difficulty understanding	Consider mini-mental test. Ask about emotional distress and make reference to psychological needs section
4	Headache	Consider ‘PQRST‘ question sequence as for pain. Is there a history of migraine? Consider asking about: Visual disturbances Dizziness Loss of balance
5	Dry mouth	Feeling thirsty	Consider asking about severity and fluid intake. Check if related to medication.
6	Sore mouth	Ulcers, thrush, swelling, condition of teeth, problems with dentures.	Remember Osteonecrosis of the Jaw (ONJ) if on bisphosphonates
7	Shortness of breath	Difficulty breathing or increased breathlessness when eating or drinking	It is often helpful to explore the degree of breathlessness by asking about how much exertion they can manage
8	Cough	Coughing up phlegm, coughing up blood
9	Feeling sick	Nausea	Consider exploring if there are any triggers (e.g. clinical settings, food, smells, medication)
10	Being sick	Vomiting
11	Bowel problems	Changes in bowel habit, constipation, diarrhoea, Incontinence, passing mucous or blood	It is often helpful to explore bowel frequency and consistency and what is normal for them
12	Bladder problems	Problems passing urine, blood in urine, incontinence, needing to urinate more frequently than usual, burning, itching, discharge	Think about spinal cord compression with recent onset of weakness and sensory loss
13	Feeling weak	No energy
14	Feeling tired	Feeling exhausted Mental exhaustion, fatigue
15	Problems sleeping at night	Difficulty getting off to sleep, problems staying asleep, bad dreams, hallucinations
16	Feeling sleepy during the day	To assess severity it may be helpful to ask if the patient would drop off to sleep if – reading watching TV, resting quietly, having a conversation
17	Loss of appetite	Loss of taste, metallic taste, early fullness, indigestion
18	Change in your weight	Weight loss, weight gain. Clothes not fitting properly	Weight loss over 3 – 6 months
19	Problems with swallowing	A sensation of food sticking in throat, coughing or choking when eating / drinking, pain on swallowing, the need to clear the throat after taking a drink or food, finding dryer food difficult to swallow
20	Concerned about changes in appearance
21	Feeling restless and agitated	Mental restlessness or anxiety. Physical agitation or tremor	Consider any recent changes to medication (e.g. opioids anti-emetics and anti-psychotics
22	Feeling that your symptoms are not controlled	It is worth being aware that some patients may feel the need to leave a degree of symptom uncontrolled to avoid medication “ masking” their disease

Note

All the symptoms described in questions 14 -18 could be related to emotional or psychological distress – see Section 3 Chapter 3.

What do I do now?

In trying to decide what to do with a particular physical concern it is often helpful to consider the story behind it.

Chronic problems or symptoms associated with co-morbidity may be being managed already by a GP or specialist. If the patient feels that more needs to be done then it is probably best to direct the patient back to their GP or specialist. If the patient is really not satisfied with the current care they are receiving you can support them with seeking a second opinion (e.g. from a different GP within the practice or an appropriate specialist).

Newer problems may need bringing to the attention of the supervising doctor or nurse (as appropriate). If the supervising team is unable to manage the problem then it may be necessary to direct the patient back to their GP or refer to the palliative care team (if they meet the local criteria for this).

Occasionally a patient will be so unwell that they need admitting to hospital and this should be agreed with the supervising doctor / nurse or arranged via the GP.

Some areas have specific services or clinics that are available to support patients with particular physical symptoms:

Breathlessness service - specially designed to help manage chronic breathlessness

Continence advisors

Dental services - for specific dental problems

Allied Health Professionals (AHPs) can offer a wide range of support that is relevant to many physical symptoms. The following page highlights some of the physical symptoms where AHP input may be beneficial.

Some physical symptoms will be transient and self limiting (particularly those associated with cancer treatments) and in this situation the patient may benefit from some reassurance as well as any appropriate treatment

Specific Allied Health professionals (AHPs) Support

This section looks at the SPARC questions where AHPs may be able to offer specific help to your patients. Also see the roles of the AHPs set out in the appendix.

7. Shortness of breath

Physiotherapists could teach breathing control techniques and breathlessness management, including pacing and positioning to ease breathlessness.

Occupational therapists could help the patient to manage their daily activities in way that minimises breathlessness e.g. Pacing.

8. Cough

Physiotherapists could help if the cough is productive and your patient is struggling to cough the phlegm up. By teaching chest clearance techniques, your patient can be supported to manage this more effectively.

11. Bowel problems

Dieticians may be able to advise patients on alterations to their diet to help manage unresolved and ongoing problems with constipation or diarrhoea.

13. Feeling weak

Physiotherapists could help if the weakness is due to muscle wasting / disuse, by advising on suitable exercises to minimise this and in some cases strengthen weak muscles. Walking aids may help the patient feel steadier.

14. Feeling tired

Occupational therapists could advise on energy conservation / managing fatigue and can provide equipment to make everyday tasks easier.

Physiotherapists could advise on gentle exercise and increasing activity levels to help with fatigue management.

17. Loss of appetite

Dieticians can advise patients on how to maintain calorie and protein intake, choose food and prepare meals.

18. Changes in your weight

Dieticians can offer advice on weight management, whether this is weight loss from decreased appetite / illness or weight gain due to medication / treatments.

19. Problems with swallowing

Speech and Language Therapists (SALTs) could assess the swallowing problem and recommend techniques or alterations to food consistencies to help with this.

3.3. Psychological Assessment

Psychological Needs

Why is it important to assess psychological needs?

Macmillan’s ‘Worried Sick’ report shows that 45% of people say that emotional aspects of cancer are the most difficult to cope with, as compared to practical and physical effects. The report shows that as a result of a cancer diagnosis, 75% of people experienced anxiety and 49% of people experienced depression.

Some people may have pre-existing psychological difficulties or mental health problems which will affect the way they cope with a cancer diagnosis and its treatment.

Having the conversation to explore these needs further

General guidance

Remember that if someone has scored 4 or more on the rating of global distress, this is likely to be indicative of significant psychological distress.

If the person has highlighted any of the psychological issues as significant or if you have concerns, you may want to ask an open question to start to explore this further:

e.g. “Can you tell me a little more about this problem?”

It can be useful to normalise the person’s difficulties; this means validating them as both understandable and important to discuss further.

e.g. “Not surprisingly many people with cancer experience some level of anxiety. Often it settles over time but sometimes it can make things very hard for people. Do you feel that anxiety is an issue for you?”

Simply acknowledging distress can be helpful for many patients.

If you identify from the conversation that these difficulties were present before this episode of illness, we would recommend that you ask about any help that the person has received in the past or that they are currently receiving e.g. Support from GP, anti-depressants, contact with mental health services.

Guidance on specific issues

Anxiety

If anxiety has been highlighted as an issue, it may be useful to have a further conversation to clarify the extent of the anxiety and how it is impacting on the person. This may include asking:

whether there are specific anxieties or whether it is more a general feeling of anxiety?

how often the person is feeling anxious, whether there are specific times they are feeling anxious?

how the anxiety is impacting on them?

- “Are there any times when the anxiety feels almost	overwhelming?”

- “Is there anything that you are avoiding because of this	anxiety?”

Depression

If someone has highlighted low mood as a significant problem (specifically questions 24, 26, 28, 29), we recommend that you explore this further.

Physical signs of depression include:

Reduced or increased appetite

Psychomotor agitation / retardation

Insomnia / hypersomnia

Fatigue or loss of energy

However, these signs can be of less value when someone is physically ill. Therefore it can be of more use to focus on psychological features (i.e. the person’s thoughts and feelings):

feelings of sadness, despondency or despair

e.g. “Have you been feeling very sad or despondent?”

feelings of hopelessness, helplessness or pessimism

e.g. “Have you found yourself feeling hopeless or helpless?”

loss of ability to enjoy things, loss of motivation, withdrawal, passivity

e.g. “Are you able to get any enjoyment or pleasure from things that	you used to enjoy doing? Are you able to get interested in things or do	you feel that you can’t be bothered?” (If they are unable to do the	things	they used to enjoy doing, do they experience any enjoyment or	pleasure?)

feelings of worthlessness, guilt or self-blame

e.g. “Do you blame yourself or feel guilty about things that might not be	your fault?”

It is important to find out whether these feelings are transient (e.g. good days and bad days) or more frequent and longer lasting (e.g. most or all or the time).

Suicidal Thoughts

It is important to follow up on any suicidal concerns expressed. Remember, there is no evidence to suggest that asking about suicidal ideation or intent will lead to increase risk of suicide.

Consider the following issues:

suicidal ideation (see questions 29 & 30 of SPARC)

suicidal intent – it can be useful to distinguish whether the person is expressing a wish to die/end their life or whether it is more to do with wanting an end to their illness or situation. Also whether these thoughts are fleeting or difficult to dismiss?

a plan to commit suicide and the means to do so

e.g. “Have you thought about how you would end your life? Have you	made any preparations to do this?”

risk factors that might increase the risk of committing suicide, including:

previous suicide attempts, social isolation, presence of psychiatric disorder, poor coping abilities

protective factors that might reduce the risk of committing suicide, including: social support network, having coped with past adversity, sense of responsibility to others, moral or ethical objections to suicide

Sexual Concerns

If sexual difficulties have been highlighted as an issue (question 31 of SPARC), find out about the nature, severity and impact of these difficulties which may be related to the following:

loss of libido

e.g. “Are you less interested in sex or being intimate?”

physical difficulties as a result of treatment, changes in sexual functioning or pain

e.g. “Do you experience any physical difficulties having sex e.g. pain,	problems with your erection?”

changes in sexual relationship

e.g. “Is it difficult for either you or your partner to be physical close or	intimate?”

concerns about appearance and body image (appearance is also asked about in question 20 of SPARC)

e.g. “Are there any things that you avoid doing because you are	unhappy with your appearance, for example catching sight of yourself,	letting your partner see you naked or dressing, or using public	changing rooms or toilets?”

What do I do now?

By talking through and exploring a person’s concerns you are already offering them some support through encouraging them to share their experiences and actively listening. The following are some ideas for building on this:

Monitoring and watchful waiting

You may agree with the person to keep on meeting and to spend some of that time continuing to monitor their levels of psychological distress.

You can use the rating of global distress to help monitor the person’s psychological distress – if their score has increased by 3, this is a significant increase

Watchful waiting is important during transition times (e.g. receiving news about diagnosis, during treatment) – psychological difficulties may lessen as the person adjusts to the changes

General psychological support – compassionate and empathic listening, signposting to other services

Information giving – some anxieties, particularly those based on misperceptions, may be reduced by the person receiving appropriate information

Exploring strengths and resources

If they feel that they are coping, it can be useful to ask a few questions about how they are coping, for example:

“How have you managed to cope so far?”

“What is helping you to cope?” “What existing support is available?”

“What helps you to think that you will carry on coping?”

“How have you coped with difficult times in the past?”

These sorts of questions help to find out about and emphasise the strengths and resources the person has that are helping them cope.

Managing suicidal risk

If your conversation highlights serious concerns about risk of suicide, let the person know that you are concerned about them and that you have a responsibility to do something about this. Refer to local guidelines for management of this risk which may include:

contacting the GP and informing them of your concerns

contacting the local community mental health team or crisis team

in the event of immediate risk, removing all means of self harm and taking action to get the person safely transported to A&E

Do seek advice from colleagues or supervisor if you are unsure of what action to take or if you need further support so that you are not managing this risk in isolation.

Other psychological interventions

Depending on your level of skill and competence, and further training you have received, other interventions may include:

anxiety management strategies including relaxation and visualisation

psycho-educational approaches, for example to help cope with specific symptoms

problem solving – this can help the person to think about what might be done to resolve the difficulty

Communication with other professionals

Think about who else in the team or other services providing care for this person need to know about the issues that have been highlighted. If the person has support in place for existing mental health issues it is worth contacting them (with the persons permission) to make them aware of what you have discussed.

Referring on to other services

It is important to ask the person whether they want any further help or support with any of the issues that are raised. It is necessary that you are aware of specialist services that are available locally as well as their referral criteria (this may include voluntary as well as statutory services).

When discussing the possibility of referring to ‘psychological services’ it is helpful to reassure the person that such referrals are common place and are in no sense a sign of failure or shame. It may be useful to recognise that the timing may not be right and it may be necessary to have this discussion again at another time. The person may already feel burdened by a number of appointments or may wish to focus on emotional issues after their treatment is over.

If they do not want to be referred on it may still be helpful for the person to continue to receive some emotional support and discussion of their concerns with yourself. If the person is reluctant to be referred on or the timing is not right, you may benefit from some informal discussion and consultation with local specialist service providers to support you in your role providing emotional care.

3.4. - Spiritual and Religious Issues

Spiritual and Religious issues

If the questions in this section have highlighted a concern for the patient, it may be helpful to explore this a little more. Before further conversation, it is worth being aware of the following:

Any information provided about the person’s cultural / ethnic / religious background may be useful in the discussion.

People use many different words to refer to the ‘spiritual’ aspects of their life and assessors need to be aware of alternative terms and be sensitive to people’s preferences. A number of alternative terms are listed here, which may be taken as prompts for all items: Faith, Belief, Personal philosophy, Religion, Spirituality. Personal support, Inner strength, Personal doctrine.

It is important to be sensitive with regards to the use of end-of-life references at early stages of the patient journey.

Ask an introductory question that will allow the patient to outline their belief / faith (be it ‘religious’ or non-religious, conventional or unconventional) and their current concern or challenge to that belief. This introductory question may depend on what the patient has highlighted on the SPARC questionnaire but should be open enough to allow any issues to be explored, for example:

“You have highlighted that you have had some thoughts about death or dying and that these may have been causing you some worry. Do you feel able to tell me a little more about what is worrying you?”

Or

“You have highlighted that you have some spiritual or religious needs that are concerning you. Would you feel able to tell me a little more about these concerns?”

The range of potential concerns in this section is wide and varied but may fall into one of the following categories:

Impact of diagnosis or illness on faith / belief.

Practical support relating to religion or spiritual matters.

Practical requirements or restrictions you may need to know about e.g. diet, medicines, treatments or transplants.

Concerns or desires regarding a ‘goal’ they want to achieve in their life, such as attending a forthcoming wedding, important occasions, family gatherings, holidays, big events.

Further exploring concerns in these areas involves listening in a non-judgmental way and allowing the patient to share their thoughts and feelings. Sometimes people will need encouragement to share what can be very personal information. Using a range of non-verbal and verbal prompts can help with this process. For example:

Nodding, smiling and using encouraging noises

Summarising what the patient has said and checking you have understood correctly

Asking about feelings where appropriate – “How has that made you feel?”

Using open prompts to seek more information – “Can you tell me a little more about……….to help me understand”

What do I do now?

Some of the issues raised here will need no specific action other than listening and acknowledging the concern. It is common for illness to have an impact on people spiritually and having the opportunity to express this is often helpful in itself. Sometimes people’s greatest concern is that their thoughts and feelings are somehow invalid and so this is an opportunity to encourage them that there is no right or wrong way to feel and that their concerns are important.

If the patient wants to discuss things further with someone or needs some specific support then you can encourage them to seek out an appropriate person. The patient may have in mind the best person but if they are unsure, chaplaincy services (Contacts for the Chaplaincy team - see end of this section) will often be able to help (either directly themselves or through signposting to other faith leaders etc).

Some people simply need time and space in an environment where they feel cared for and are seen as a ‘person’ rather than a ‘patient’. Where a person gets this kind of support from will be very variable. Some people find that having a complementary therapy is helpful and there are many different therapies available to those affected by cancer. Others may find a particular spiritual activity helpful and may simply need encouragement to engage in such an activity.

Practical requirements or restrictions raised during an assessment should be communicated to the clinical team where appropriate and with permission. Information about life goals should be dealt with in a similar way. It may be possible to support a patient in a particular goal or offer advice but this will depend on the situation and the role of the person undertaking the assessment.

3.5. Independence and Activity

Independence and Activity

The questions in SPARC that relate to independence and activity (34, 35 and 36) are primarily concerned with change and how it is affecting the patient. To assess the needs of a patient in this area will involve gathering enough information about how things have changed to enable you to decide how best to support the patient. Whilst it is important to start by simply hear the patient’s concerns, it may be necessary to use some more focused questions to elicit a greater level of detail about a particular issue.

Getting started

Using an open question will help to get the issue out in the patient’s own words. For example:

“You have highlighted concerns about independence and activity. Can you tell a little more about what is concerning you?”

Getting enough detail

Depending on the response to your opening question, you may need to gather some more information. It would be recommended that you try and make sure you have covered the following issues:

How exactly have things changed?

What factors are contributing to the change? e.g. a particular physical restriction

How is the change affecting the patient? e.g. practical and emotional

Has anything been done (or planned) to improve the situation? e.g. professional input, house modification etc

Does the patient have any ideas about what might help and what support they need?

What do I do now?

Knowing how to support a patient with particular needs will come from a good understanding of the different professionals / services available and their specific roles / referral criteria. The following page describes the various AHP roles that may be key to many of the issues raised in this part of the assessment. It would be recommended that you also obtain information about local services and referral criteria to supplement this information.

It is often difficult to predict what recovery or improvement in independence / activity will be possible and in some cases the patient will need to be supported in coming to terms with a more permanent change in level of activity and independence. In the first instance this may simply involve listening and empathy. Sometimes phrases like “This must be hard for you” combined with supportive body language (e.g., good eye contact) will be enough to convey a sense of empathy and help the patient to feel supported.

Reinforcing unrealistic expectations should be avoided. This can be difficult without removing hope but it is important to be honest whilst trying to be encouraging.

Specific Allied Health professionals (AHPs) Support

This section looks at the SPARC questions where AHPs may be able to offer specific help to your patients. Also see the roles of the AHPs set out in the appendix.

34. Loosing your independence

Walking - If your patient is struggling with walking then a referral to Physiotherapy could help by them assessing for any walking aids and teaching patients to use them safely and effectively, along with exercises to help maintain muscle strength. Physiotherapists can also arrange wheelchairs to help with outdoor mobility, as can Occupational Therapists.

Standing - If your patient is struggling to stand up from a chair, toilet or bed then Occupational Therapists could assess the height of the chair, toilet or bed and arrange adaptations to help patients cope more easily.

Climbing stairs - If your patient is struggling with climbing stairs, again and Occupational Therapist could assess for additional rails, or if appropriate, a stairlift.

Stiffness of joints - If your patient has stiffness in any joints a physiotherapist may help to improve the range of movement in these joints

35. Change in ability to do daily tasks

If your patient is struggling to manage personal care there could be several reasons for this, explore the problem further then choose

Equipment - Occupational Therapist could arrange equipment to make tasks easier – i.e. Kettle tippers, stools to sit on in kitchen or bathroom, raised toilet seats, bath aids if the patient is able to manage themselves.

Assistance - If the patient needs another person to help them do these tasks, referring to social services/ social work for an assessment of need and provision of carers to give assistance if needed.

Physical ability - Physiotherapists, by improving joint range, and increasing stamina, may enable patients to be able to manage personal tasks more easily

36. Changes to your ability to do household tasks

Assistance - A referral to Social Services for carers is needed if patients need someone to help to do these tasks. Carers can help with things like shopping and cooking once these needs have been assessed and time allocated for these activities. Social Services no longer offer a cleaning service, but your local Social Services should be able to provide recommended companies that offer this locally if your patient is unable to do this for themselves.

Equipment - If having some equipment would mean your patient would be able to carry on doing tasks themselves, then seeing an Occupational Therapist would enable them to have that equipment – such as kettle tippers, tap turners, special cutlery, perching stool, long handled handi-reachers, that would enable them to remain independent.

3.6. Family and Social concerns

Family and Social concerns

Background

Family and friendship dynamics can be complex and are often a concern to us even at the best of times. A cancer diagnosis can put significant pressure on relationships and so it should be no surprise that this section will raise issues for many patients. The questions in SPARC that specifically relate to these sorts of issues (37, 38, 39 and 40) all deal with slightly different kinds of concerns and so may require different kinds of exploration. For this reasons they will be looked at individually although, as with many aspects of holistic needs assessment there will be overlap of issues and so it is important to keep the bigger picture in mind and make reference to other concerns where appropriate.

Finding out more

Before exploring the following concerns, it may be worth getting some basic family history. This doesn’t necessarily need to be detailed but should give you an idea of who the significant people are and who is performing any ‘carer’ roles. If it doesn’t feel appropriate to do this early on then it can be brought in to the conversation as it feels relevant.

Q37 – I feel that people do not understand what I want

There are two things worth exploring here. Who and What? For example:

“Can I ask who it is that doesn’t understand?”

and

“Can I ask what it is they not understand?”

This will make it easier for you to help the patient see a way forward.

Feeling that others do not understand you can lead to a variety of emotional responses (e.g. frustration, anger, hopelessness, hurt). It may be worth exploring how the patient is feeling as this may affect the way you approach supporting the patient with this issue. Often a simple “How does this make you feel?” will enable the patient to share what is going on inside.

Q38 – I am worrying about the effect that my illness is having on my family or other people

Again, it is worth getting some more detail. For example:

“Can you tell me a little more about what is worrying you?”

or

“Is there something particular that is worrying you?”

If it doesn’t become clear from the initial response to your open question, it may be worth asking if there is any particular family or friends that they are worried about.

Q39 – I feel a lack of support from my family or other people

There is an opportunity here to explore expectations. For example:

“Do you feel able to tell me what kind of support you are hoping for	from your family or friends?”

What is lacking will often naturally come out but if it doesn’t it is easy to follow up this opening question with “…and what do you feel is lacking at the moment’’.

Again, it may be worth exploring feelings associated with this issue as they may affect the way you approach supporting the patient.

Q40 – I need more help than my family or other people have been able to give

It may be that the patient feels well supported but is aware that their needs are beyond what their family or others can manage. It is worth being aware that there may be overlap here with Q39. Although this question (Q40) doesn’t talk about lack of support, the situation may not be black and white.

It is important here to explore what the patient sees as there ‘needs’ and where they feel these exceed what can be provided by family and others. Encouraging patients to talk clearly about their needs can be difficult but using some ‘normalising’ and a slightly focused question may help. For example:

“It is common for people to worry about the help they might need from	others. To help me understand how you are feeling, would you be able	to tell me what help you need from others?”

This will usually lead to an explanation of why their needs are too much for others but if it doesn’t then you will probably want to explore this. For example:

“You have highlighted that you feel this is more than your family or	others can give. Can you explain this a little more for me?”

It may be necessary to clarify exactly what the ‘limitations’ are and why. It is worth summarising and checking during this kind of conversation so that the patient knows you have heard and you know you have understood.

What do I do now?

These are not issues that lend themselves to neat and tidy solutions. Patients often need ongoing support with how they address the issues concerning them.

It is worth asking the patient if they feel there is anything that would help improve things. Two things that can be helpful and are worth offering (if not suggested by the patient) are:

Seeing the patient with family or others to help improve shared understanding and allow for questions / concerns to be addressed.

Providing information specifically for family and others

It is good to encourage open communication between the patient and their family and friends. This can be challenging for some patients and needs to be done quite gently and without appearing judgmental.

One cause of anxiety to the patient may be how to relate news of their illness to a child. There are pointers on what, and when to tell children and about choice of words on the Winston’s wish website (www.winstonswish.org.uk) and the patient may find it useful to visit the website or be provided with the information it contains.

Some of the issues raised may be purely practical and these can be addressed using the approach set out in the ‘independence and activity’ chapter.

If it is clear that the patient needs ongoing support with the issues raised and you are not in a position to see the patient again, you should consider who may be best placed to offer ongoing support. This may be the GP or a member of the palliative care team (where appropriate). A local cancer support centre or cancer information centre may be able to offer advice and help to patients and their family and friends.

3.7. - Treatment Issues

Treatment issues

Background

Increasingly it is recognised that cancer treatments can cause short and long term effects. Some of these effects will be minor whilst others are more significant. Thankfully, many of the effects are transient but a few may be long lasting or permanent. It is important that we don’t underestimate the impact of these effects and that we respond to patients concerns with regards to their current health and potential future problems. The two SPARC questions that focus on effects of treatment (41 and 42) will be dealt with in this chapter.

What is the patient concerned about?

If you are not aware of what treatment the patient has had, it may be worth getting a brief history of this. For example:

“You have highlighted some concerns about effects of treatment. Can I	just clarify what cancer treatment you have had so far?”

Q41 – I am bothered by side-effects from my treatment

It would be recommended that a questioning sequence similar to that used for physical symptoms be used to gather the right level of information about side-effects of treatment (see below). However, it may be worth starting with a general open question about what is bothering them to allow the patient to describe the issue in their own words first.

Questioning sequence

Elicit a description of the problem: onset/cause, duration, intensity, consistency, nature and rate of change

Ascertain the effect of the problem upon the patient’s normal activities / function

Elicit the history of management of the problem, including treatments tried, use of equipment, and extent of self-care

Review with the patient whether management / treatment is helping

Ascertain further needs

Explore related fears or anxieties

Q42 – I am worrying about long term effects of my treatment

This is an opportunity to find out exactly what is at the heart of the patients worry. The worries may be well founded or irrational but should be treated with care and attention regardless of their basis. Don’t be too quick to give advice or reassure as we know that this can block further sharing from the patient. Take time to hear and explore all their worries before offering advice or action.

What do I do now?

This will depend very much on your own knowledge and expertise.

If you are familiar with the side-effects and potential long term or late effects of the patients treatment you may be able to advise and support the patient with their symptoms and any future concerns.

If you are not familiar with the patient’s treatment then you will need to pass them back to the team who supervised their treatment.

If you are considering giving information about current or potential effects of treatment you may want to consider the points raised in the following chapter on ‘information’. It is important that information is tailored and well supported so that the patient can get maximum benefit from it.

3.8. Assessing and Responding to Information Needs

Assessing Information Needs

Background

The NICE guidance ‘Improving Supportive and Palliative Care for Adults with Cancer’ states that patient

Information needs to be of high quality to inform, support and reassure patients and carers. This means it must meet the needs of the target group and be evidence-based, balanced, regularly updated, culturally sensitive, available in a variety of formats and composed in plain language. Service users and experts must be involved in its design and development. (NICE, 2004, P64)

Patient information includes:

Standard documents such as letters of appointment, clinic details, discharge and follow up plans.

Face to face with a clinician and/or patient information advisor.

Leaflets, booklets, handouts and online resources.

Signposting to cancer information services, support groups and other relevant statutory and non-statutory services.

Patient information in this sense is not related to confidential information contained in medical records. If you require advice on issues relating to confidential information consult you NHS Trust Information Governance Manager.

The provision of patient information needs to be supported by good communication and effective delivery systems. The national information pathways identify the following as key points in a cancer patients experience when information should be routinely offered and support provided:

Prevention

Awareness and early detection

Referral

Tests and Investigations

Diagnosis and staging

Treatment

Cancer in remission and survivorship

Advanced disease and recurrence

Palliative Care and End of Life

Having a conversation to explore these needs further

Patient information depends on the clinician offering guidance, explanation and signposting. It is a constant process of ensuring that the patient has been offered relevant, timely and accurate information at key stages in their experience. In order to ensure information is appropriate it is important to be aware of any specific needs relating to:

Physical disability (i.e. visual impairment)

Learning disability (i.e. being aware of mild to moderate learning disability)

Literacy skills (i.e. readability, plain English, audio)

Cultural issues (i.e. religion and tradition)

Language (i.e. interpreters)

Being considered and selective is also important as too much information can be confusing and cause distress. Not enough information can also increase anxiety so it is essential to continually assess information needs and routinely ask if the patient requires any new information or clarification about information already provided.

When a patient prefers not to accept information it is important to ensure that this is recorded and followed up at a later stage. The principle is to ask the patient regularly whether they have any current need for additional information. It is also useful to address any gaps in the provision of information, for example, details about appointments, specific information about diagnosis or treatment or support with finances and future planning etc.

Family and carers may require information and may also be instrumental in ensuring that the patient receives and understands any information they require. It may be useful to consult with family members who may be able to support with patient information by accessing online resources at home or contacting and/or visiting local cancer information and support centres.

The multidisciplinary team is the mechanism that can anticipate where the patient will be next and maintain an awareness of information that has been:

Identified and offered

Accepted or refused by the patient

Supported with face to face contact

Signposting has been undertaken

The successful provision of patient information with support can significantly reduce anxiety and improve the confidence and autonomy of the patient.

Patient information provision is based on TRUST.

Timely

Relevant

Understandable

Supported

Tailored

Information prescriptions are currently being developed for all cancer types. A national delivery system will provide online information in conjunction with locally developed patient information and services. NHS Trusts and Primary Care Trusts will be responsible for providing information prescriptions across health and social care. The Cancer Action Team is currently piloting the national delivery system. The system aims to support the assessment of patients needs by providing high quality national and local information relevant for all stages of the patient’s experience.

It is hoped that this national project will dovetail with the holistic needs assessment in order to ensure that information needs are assessed at key stages in the referral pathway across tertiary, secondary and primary care.

The following sources of information are well recognized for the support they offer to patients and healthcare professionals. There are many other resources and you may wish to record any which you find particularly useful at the back of this manual.

References for Patient Information

Producing Patient Information (King’s Fund, 2003) go to:

www.nursingtimes.net

Information Accreditation Scheme go to:

www.dh.gov.uk/en/Healthcare/PatientChoice/BetterInformationChoicesHealth/Informationaccreditation/index.htm

NHS Guidelines for producing patient information go to:

www.nhsidentity.nhs.uk/page/5287

www.cancerimprovement.nhs.uk/View.aspx?page=/cross_tumour/patient_carer.html

Information prescriptions general information go to:

www.informationprescription.info/

Information prescriptions resources go to:

www.informationprescription.info/resource/index.html

To download 2008 Evaluation of Information Prescriptions go to:

www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_086889

For further information email:

ncatpatientexperience@gstt.nhs.uk

For national cancer information go to:

www.macmillan.org.uk

For locality based patient information go to:

Barnsley DGH:	www.barnsleyhospital.nhs.uk/patients-and-visitors/

Barnsley PCT:	www.barnsley.nhs.uk/

Doncaster DGH:	www.dbh.nhs.uk/Patient-Visitor-Information.asp

Doncaster PCT:	www.doncasterpct.nhs.uk/default.asp

Bassettlaw PCT:	www.bassetlaw-pct.nhs.uk/index.htm

Rotherham DGH:	www.rotherhamhospital.trent.nhs.uk/Patients/default.asp

Rotherham PCT:	www.rotherhampct.nhs.uk/patientschannel/default.asp

Sheffield STH:	www.sth.nhs.uk/patients/index.php

Sheffield PCT:	www.sheffieldpct.nhs.uk/index.php

Chesterfield RH:	www.chesterfieldroyal.nhs.uk/patients/index

Chesterfield PCT:	www.derbyshirecountypct.nhs.uk/

Cancer Information and Support Centres:

Doncaster:	www.stjohnshospiceandinformationandsupportcentre.co.uk/

Rotherham:	Earl of Scarborough Suite, Level C, Rotherham FTH, Moorgate Road, Rotherham S60 2UD Tel: 01709 307659

Sheffield:	www.cancersupportcentre.co.uk

4. Action Planning
Action planning

Introduction

This is a key part of the Holistic Needs Assessment process and will help both you and the patient to identify a way forward. Hopefully the assessment will have been ‘therapeutic’ in its own right, but if the patient does identify needs, they may be keen to know what you think can be done to support them.

Developing an action plan

It may help to verbally summarise the conversation at this point. This demonstrates to the patient that they have been listened to, and enables them to clarify or correct any misunderstandings. Having summarised, it is usually possible to group the patient’s concerns into a number of discrete issues and begin the process of planning what to do. The possible actions will probable fall into three categories:

Direct support – You may already have dealt with a concern through reassurance or information. You may have a plan of action that will enable you to support the patient yourself using your own skills and resources.

Signposting – It may be appropriate to provide the patient with the information they need to find support for themselves e.g. a telephone number, website or person to contact.

Referral – Some concerns or issues may require direct referral to another professional or service that can offer the right support.

Don’t feel obliged to do everything for the patient. Many patients say they want their healthcare professional to give them the tools to help themselves where appropriate. Obviously, you will need to make a judgment as to how appropriate ‘self management’ is by assessing how able and motivated the person is and how critical the issue is.

But remember – A score of 3 should be regarded as potentially an urgent request for help and patients should not leave the assessment process without these needs being addressed. It should also usually lead to a date being set for some form of follow-up.

Recording the plan

The project team has suggested a very simple template which you can use. It has 2 columns with ‘concern / issue’ in one column and ‘action’ in the other. In our opinion, a simple template is more likely to be used effectively.

It is recommended that the assessor put enough information in the boxes for another person to be able to read it and make sense of it. The action column is particularly important and should include details of anyone the patient is being referred to or signposted towards.

There will be space on the template for some background information and context so that anyone else who sees it can tell when the assessment was carried out and what the setting was.

The template is one suggestion but feel free to devise your own. It may be that your setting is fully computerised and so the action plan will need to be electronic. There are no rules but we would recommend a simple ‘issue’ and ‘action’ approach if possible.

2 other pieces of information may be useful to include on the action plan:

Do you plan to repeat the assessment – this will depend on whether you are going to see the patient again and the severity of the issues raised. If you are continuing to be involved and the patient raises some significant issues, then it is well worth planning to repeat the assessment within a fairly short space of time e.g. 2 weeks.

What was the ‘global measure of distress’ score? – This will allow some comparison by a healthcare professional that doesn’t have access to the original SPARC questionnaire.

What do I do with the action plan?

This will vary depending on your setting. It is recommended that as a minimum, a copy of the plan is given to the patient and their GP (with the patient’s permission). A copy will almost always be kept in the patient notes along with the SPARC questionnaire. There may be other people whom you want to share the information with and as long as the patient agrees to this you are free to pass on a copy. Confidentiality and record keeping should be dealt with in keeping with NHS national policy and any local policies.

What do I do with the questionnaire?

The Action Plan should be a summary of the conversation and should describe the patient’s concerns. For this reason it is not essential that a copy of the questionnaire is passed on. The questionnaire can be filed in the patient notes and referred to if and when the assessment is repeated. Filing and storing of the questionnaire will need to be in line with local policies surrounding patient notes.

5. Implementing a Holistic Needs Assessment Process
Template Policy for the use of the Holistic Needs Assessment Process

This is a template policy. Feel free to amend it for use in your own setting. It is only meant as a guide / example.

Contents

Paragraph	Page
1	Introduction	4
2	Holistic Needs Assessment (HNA)	4
3	Aim	5
4	Actions	5
5	Administering SPARC – see handbook	5
6	Interventions	6
7	Recording of SPARC	6
8	Policy Intention	7

Guidelines for Holistic Needs Assessment for

Adult Cancer Patients using SPARC (Sheffield Profile for Assessment and Referral to Care)

1.	Introduction

We know that the incidence of cancer is increasing and, because we are getting better at treating it, the prevalence is increasing even faster. In simple terms this means that year on year more people are living with a diagnosis of cancer. This is the reality behind the ‘survivorship’ agenda contained within the Cancer Reform Strategy. At the heart of the survivorship agenda (now being taken forward by the

National Cancer Survivorship Initiative - NCSI) is the fact that patients	will have their own set of needs as a result of their cancer diagnosis	and unless we understand what these needs are and make plans as to	how they can be supported we will be allowing significant levels of	morbidity to persist and possibly become chronic problems.

In addition to the survivorship agenda are the recommendations contained within the IOG for supportive and palliative care. The IOG talks about the importance of needs assessment at numerous points in relation to psychological, rehabilitation, spiritual and information needs. Fundamental to the IOG is the concept of Holistic Needs Assessment that seeks to identify all the needs of the patient as the first step to meeting those needs.

Lastly, the area of information remains high on the agenda. We now have lots of information we can give to our patients but have failed to make significant improvements in how that information is delivered. For this reason the ‘information prescription’ concept has come to the fore and promotes the timely and personalised giving of information.

2.	Holistic Needs Assessment (HNA)

The Network Supportive and Palliative Care Group (NSPCG) have developed a model of assessment based on a patient completed questionnaire which acts as a ‘springboard’ to a conversational style of assessment. The questionnaire (SPARC) covers a variety of physical, psychological, social, spiritual and information needs. A healthcare professional uses the questionnaire to help inform a discussion with the patient about their concerns and then formulates an action plan which may involve signposting, referral or dealing with an issue directly where appropriate. It is anticipated that the HNA will be carried out at key points on the cancer journey and this may vary between cancer sites.

3.	Aim

All patients diagnosed with cancer in Doncaster & Bassetlaw Cancer

Unit are routinely assessed. This is to ensure patients are referred to	the appropriate support services and treatment in a timely manner.

4.	Actions:

4.1 Timing of routine screening - see handbook

First screening is advised to be offered to patients post diagnosis according to each MDT’s operational policy

Second routine screening to be offered post completion of cancer treatment/surgery.

Unless a patients condition changes or in the clinician’s clinical judgment, the need for continued routine screening is not suggested. However :

Subsequent routine screening to be offered under the following circumstances:

Post diagnosis of recurrent or advanced disease at the stage when a patient is informed there is no further active treatment planned.

The patient requests re assessment

5.	Administering SPARC - see handbook

If the tool is not being used within a home setting then privacy should be obtained in the clinic/ward through use of a quiet room.

All patients should be invited to complete SPARC, (to help assess how they feel). However they have the right to refuse to be screened.

Patients with special needs (for e.g. visually impaired, illiterate, fatigued) should be offered support to complete SPARC.

It may not be appropriate to use this tool with patients in the last days/weeks of life if they are highly distressed or acutely fatigued. Professionals should use their professional judgment on its appropriateness for each individual patient.

The key worker will be the health professional responsible to administer the tool or will delegate responsibility to an appropriately trained person.

Scores of SPARC should be checked by the health professional responsible for administering the tool and medium to high scores require discussing with patients through a conversation as soon as possible (with patients’ consent the relatives may be included in the conversation).

6.	Interventions

6.1	Interpretation of Scores –see handbook

A score of 0 suggests there is no concern in this area

A score of 1 should probably not be given high priority especially if there are a lot of other higher scores. However, if it is one of the higher scores it may be appropriate to explore the concern. It may also be appropriate to explore scores of 1 if they have been present on previous assessments.

A score of 2 or 3 should be explored in more detail. This can be difficult if there are a lot of 2’s and 3’s. In this situation you may want to explore the patient’s greatest concerns first and arrange to see them again to continue on the assessment or it may be possible to group some concerns together and offer appropriate support based on a less detailed assessment. There is no right answer but remember that the aim is to assess in enough detail to be able to offer the right support, signposting and referral.

An appropriate response to a completed SPARC questionnaire will take into account the individual scores, the patients own prioritisation, the chronicity of any concerns and the overall context (but not the overall score).

Outcomes from the screening should be discussed with the patient.

7.	Recording of SPARC

The date of screening and score should be recorded in the patient’s medical notes and the date of the next routine or reassessment screening date also requires recording. The completed SPARC questionnaire and action plan should be filed in the patient’s notes. The action plan should also be given to the patient and communicated to other key members of the Healthcare team (including GP).

It is the key workers’ responsibility to ensure that the next screening date is communicated to the patient’s health care team as appropriate.

If the patient is not assessed or declines use of SPARC screening tool please record in the patient’s case notes.

8.	Policy Intention

This policy is intended to inform the practice of clinical nurse specialists, consultants, oncologists and allied health professionals working in cancer and palliative care.

Holistic Needs Assessment covering letter

It has been highlighted that a letter introducing the HNA process might be helpful and improve patient engagement with the process.

The following letter is an example of a covering letter that could be used to introduce the SPARC questionnaire and the process as a whole. It is hoped that you will find the phrases and descriptions useful as you develop your own local information.

Feel free to use it and amend it to suit the needs of your setting. You may wish to be more specific about the details of how the process will work in your setting and include your own logo and formatting etc

If you would prefer not to use this example as a template, that is fine.

Holistic needs assessment

We know that people who have had a cancer diagnosis can be affected in a variety of ways. For some people there will be physical concerns while others may have emotional or spiritual needs. Practical and financial worries can come to the fore during cancer investigations and treatment and these can put significant strain on people. Most people want to be well informed and involved in decision making but people’s information needs vary too.

Everyone is an individual and has their own concerns and needs. The holistic needs assessment is about helping you to identify any concerns or needs that you might have so that we can then support you better. The word ‘holistic’ means ‘whole’ and we are using this word because we are interested in you as a whole person not just a particular part of you.

The first step in the process is for you to use the questionnaire (SPARC) to help you think about your concerns and needs. The questionnaire takes a few minutes to fill in and will ask you to tick whether you have been bothered by a particular problem within the last month.

There are no right or wrong answers and if you are not sure about a question you can leave it blank.

You are welcome to ask a relative or carer to assist you with the questionnaire if you feel that would be helpful.

The questionnaire will be used by the person assessing you to make sure they focus on the things that are bothering you most. They will want to chat to you about your concerns so that they can decide how best to support you. They may be able to support you directly or need to put you in touch with someone else better placed to help you. Many people are able to help themselves if given the right opportunities and we are keen to offer this kind of support wherever possible.

The person assessing you will record a summary of the discussion and give you a copy of this. A copy will also be sent to your GP and specialist team unless you don’t want this.

We hope you find the process helpful and supportive.

Recording, storing and transferring information

The project team are purposefully not going to offer a lot of specific guidance on this issue because most areas and clinical settings have their own protocols and procedures with regards to recording, storing and transferring information.

However, here are some thoughts about the key issues

Computerisation

There is no theoretical reason why the whole HNA process or any part of it cannot be computerised. The action plan is a simple concept that could be developed as a template on most systems and this would aid the safe transmission of information.

The SPARC questionnaire has not yet been computerised which would allow a patient to use a touch screen or handheld device to complete the questions.

The SPARC questionnaire

It would be recommended that the original questionnaire be kept in the patients notes in the setting where the assessment took place. It is not necessary to do multiple copies of the questionnaire to go with the action plan.

The action plan

The action plan is the key document and so it is this that should be given to the patient and shared with other (with permission and where appropriate). Whether this is done electronically or as a paper exercise, the processes should already be in place to enable this to happen.

References

Improving Supportive and Palliative Care for Adults with Cancer

NICE guidance on cancer services (March 2004)

Holistic Common Assessment of Supportive and Palliative Care needs for Adults with cancer.

Report to the Cancer Action team

Assessment Guidance

NCAT commissioned report by the King’s College London (Jan 2007)

Macmillan “Worried Sick the emotional impact of cancer “

Macmillan Cancer Support (April 2006)

Cancer Reform Strategy Dept. of Health publications (2007)

1st Annual report on the Cancer Reform Strategy – “Maintaining momentum building for the future” – Mike Richards (Dec.2008)

Macmillan National Cancer Survivorship Initiative

SPARC-45 v1.1	SPARC We would like to know a bit more about you and your concerns. Please fill in this questionnaire (with help from a relative or carer if needed) and return it to one of our team. There are no “right” or “wrong” answers. If you are unsure of a question, please leave it blank. THANK YOU	Place your unit’s logo and title here

Your initials:………………. Date completed:....../……./…….

COMMUNICATION AND INFORMATION ISSUES
1.	Yes Have you been able to talk to any of the following people about your condition?	No
a. Your doctor
b. Community nurse
c. Hospital nurse
d. Religious advisor
e. Social worker
f. Family
g. Other people (please state):

Please circle one answer per line

PHYSICAL SYMPTOMS Please circle one answer per line
In the past month, have you been distressed or bothered by:	Not at all	A little bit	Quite a bit	Very much
2.	Pain?	0	1	2	3
3.	Loss of memory? Community nurse	0	1	2	3
4.	Headache?	0	1	2	3
5.	Dry mouth?	0	1	2	3
6.	Sore mouth?	0	1	2	3
7.	Shortness of breath?	0	1	2	3
8.	Cough?	0	1	2	3
9.	Feeling sick (nausea)?	0	1	2	3
10.	Being sick (vomiting)?	0	1	2	3
11.	Bowel problems (e.g. constipation, diarrhoea, incontinence)?	0	1	2	3
12.	Bladder problems (urinary incontinence)?	0	1	2	3
13.	Feeling weak?	0	1	2	3
14.	Feeling tired?	0	1	2	3
15.	Problems sleeping at night?	0	1	2	3
PHYSICAL SYMPTOMS continued	Not at all	A little bit	Quite a bit	Very much
16.	Feeling sleepy during the day?	0	1	2	3
17.	Loss of appetite?	0	1	2	3
18.	Changes in your weight?	0	1	2	3
19.	Problems with swallowing?	0	1	2	3
20.	Being concerned about changes in your appearance?	0	1	2	3
21.	Feeling restless and agitated?	0	1	2	3
22.	Feeling that your symptoms are not controlled?	0	1	2	3

Please circle one answer per line

PSYCHOLOGICAL ISSUES Please circle one answer per line
In the past month, have you been distressed or bothered by: a. Your doctor	Not at all	A little bit	Quite a bit	Very much
23.	Feeling anxious?	0	1	2	3
24.	Feeling as if you are in a low mood?	0	1	2	3
25.	Feeling confused?	0	1	2	3
26.	Feeling as if you are unable to concentrate?	0	1	2	3
27.	Feeling lonely?	0	1	2	3
28.	Feeling that everything is an effort?	0	1	2	3
29.	Feeling that life is not worth living?	0	1	2	3
30.	Thoughts about ending it all?	0	1	2	3
31.	The effect of your condition on your sexual life?	0	1	2	3

RELIGIOUS AND SPIRITUAL ISSUES Please circle one answer per line
In the past month, have you been distressed or bothered by:	Not at all	A little bit	Quite a bit	Very much
32.	Worrying thoughts about death or dying?	0	1	2	3
33.	Religious or spiritual needs not being met?	0	1	2	3

INDEPENDENCE AND ACTIVITY
In the past month, have you been distressed or bothered by:	Not at all	A little bit	Quite a bit	Very much
Please circle one answer per line 34.	Losing your independence?	0	1	2	3
35.	Changes in your ability to carry out your usual daily activities such as washing, bathing or going to the toilet?	0	1	2	3
36.	Changes in your ability to carry out your usual household tasks such as cooking for yourself or cleaning the house?	0	1	2	3

FAMILY AND SOCIAL ISSUES
In the past month, have you been distressed or bothered by:	Not at all	A little bit	Quite a bit	Very much
Please circle one answer per line 37.	Feeling that people do not understand what you want?	0	1	2	3
38.	Worrying about the effect that your illness is having on your family or other people?	0	1	2	3
39.	Lack of support from your family or other people?	0	1	2	3
40.	Needing more help than your family or other people could give?	0	1	2	3

TREATMENT ISSUES
In the past month, have you been distressed or bothered by:	Not at all	A little bit	Quite a bit	Very much
Please circle one answer per line 41.	Side effects from your treatment?	0	1	2	3
42.	Worrying about long term effects of your treatment?	0	1	2	3

Yes No PERSONAL ISSUES
43.	Do you need any help with your personal affairs?
44.	Would you like to talk to another professional about your condition or treatment?
45.	Would you like any more information about the following?
a. Your condition
b. Your care
c. Your treatment
d. Other types of support
e. Financial issues
f. Other (please state):

Are there any other concerns that you would like us to know about? Carry on over the page if needed

You can use this section to jot down any questions that you want to ask your doctors or other caring professionals

Question 1

Question 2

Question 3

Please circle the number (0-10) that best describes how much distress in general you have been experiencing over the past week, including today. NO DISTRESS HIGH DISTRESS

Holistic Needs Assessment Action Plan	(simplified version)

Date of Interview	Patient Name	Hosp/ NHS No.
Assessors name:
Where assessment took place:
Other key information relevant to assessment e.g. Point on cancer pathway, any communication difficulties and plans for repeat assessment Global rating of distress (0 – 10) =

Concern	Agreed Action

Roles of Allied Health Professionals and

Other Supportive staff

Rehabilitation

Several of the SPARC questions raise issues that Allied Health Professionals(AHPs) could help with. In order to assist you in recognising which AHP could best help your patient, we have included a brief description of each professional role – occupational therapists, physiotherapists, dietitians, speech and language therapists and social workers. We have also included a description of the complementary therapy and chaplaincy roles for completeness.

Please bear in mind that this information is a general description, and in each cancer locality some aspects of the roles may differ, depending on the services available in your locality.

The aim of all AHPs is to enable patients to be as independent as possible, at any stage of their illness.

Occupational Therapists (OTs)

OTs treating patients with cancer can work in hospitals, hospices, daycare units and in the community. They can help plan for discharge home from hospital/hospice or maintain people in their own homes.

OTs can provide specialist advice in adapting lifestyle, relaxation, energy conservation, time management and goal setting. They assess to aid independence and can show patients easier ways to manage routine tasks e.g. getting dressed, or prescribe equipment or adaptations to assist, e.g. raised toilet seats, stair rails, wheelchairs or hoists.

They can offer advice to patients and carers on moving and handling, comfort and positioning, larger adaptations e.g. stairlifts or re-housing to more suitable accommodation.

OTs assess patients in their everyday activities of daily living and personal care, domestic tasks, transfers, mobility and social activities, taking into consideration their physical, cognitive and perceptual function.

Physiotherapists (PT)

Physiotherapists working with cancer patients may work in the hospital, daycare units and hospice wards, and in the community.

Physiotherapists assess mobility and provide suitable walking aids to help patients remain safe and independently mobile wherever possible. They also assess joint range and muscle strength, and teach patients specific exercises to help maintain or, if possible, improve muscle strength and range of movements, to help patients continue to be as active as they can be, whatever stage of the illness they are at.

Helping patients find comfortable positions and teaching their carers how to help move and handle more safely and effectively are also part of a physiotherapist’s role. Physiotherapists can help patients with chest clearance techniques and teach them relaxed breathing positions to help manage breathlessness.

Ordering wheelchairs and orthotics e.g. drop foot splints, collars are part of a physiotherapist’s role.

Physiotherapists use a range of skills to help patients with pain control, including electrotherapy, heat/cold, TNS, positioning and manual therapy. Acupuncture and acupressure are available in some areas.

Physiotherapists can also help in the management of oedema and lymphoedema.

Dieticians

Dietitians are frequently involved in the care of patients with cancer. Many patients suffer from poor appetite and subsequent weight loss which can affect their physical and mental well being.

Appropriate dietary advice can help to minimise these symptoms and help to improve the patient’s response to treatment and their quality of life.

The dietitian undertakes a nutritional assessment and tailors advice depending on medical and dietary preferences. Nutritional intervention can involve advising on food supplements and devising enteral tube feeding regimes.

Referrals are accepted from trained medical and nursing staff, and patients are seen in hospital, clinics, care homes, hospice or their own homes.

Speech and Language Therapists (SALT)

SALT`s are specialists in communication and swallowing. These may be affected by cancer involving the structures of the brain, head, neck and throat (including laryngectomy), and also by its subsequent treatments.

Patients undergoing oncological treatment to the head and neck can be helped by SALTs seeing them prior to treatment in order to reduce their risk of developing swallowing problems or restricted jaw mobility. Changes in intelligible speech and voice are common after surgery or re-construction of oral structures.

Language is often impaired by brain tumours meaning that patients may not be able to speak, read or write. SALTs work to assess, diagnose and develop packages of care to maximise the potential of any patients that are referred to them.

Rehabilitation is undertaken within a multi-disciplinary team setting. This may involve working directly on the impairment e.g. articulatory / language or swallowing exercises, teaching patients surgical voice restoration techniques following laryngectomy or developing compensatory techniques e.g. changing food consistencies, giving alternate communication strategies, communication aids/charts etc.

SALTs play a role in palliative care supporting choices around feeding as well as maintaining communication. They also provide support for patients and carers who are adjusting to changes in function, e.g. Speech, swallowing, and how this impacts on psycho-social adjustment.

SALTs work in a variety of settings including inpatient units, outpatient clinics, hospices and in the community.

Social Workers

Social work staff work with cancer patients (service users) in the community, hospitals and hospices. They can assess for help with personal care, sitting services, daycare, meals at home, respite care and long term care. They can also discuss whether a person prefers to receive help from adult care and health providers or prefer to receive monies to purchase their own care (direct payments).

They also offer (and undertake if required) assessments of carers needs, to enable them to have the respite and support they need.

They can put service users in touch with appropriate agencies with regards to benefits, disability living Allowance, Attendance Allowance etc.

They give on going support and regularly review the needs of service users and work closely with district nursing teams and Macmillan nursing staff, and the multi-disciplinary team of doctors, nurses and other AHPs.

Complementary therapists

Complementary therapists are a varied group of professionals who provide therapies that have not been traditionally provided by mainstream NHS services. However, the benefit of such therapies is increasingly being recognised and the NICE guidance on supportive and palliative care (2004) recommended that patients should be offered good information about complementary therapies as well as choice and access to such therapies. Many good complementary therapy services are now available (both NHS, private and voluntary sector) and will provide good patient information.

The therapies available will vary but may include massage, aromatherapy, reflexology, shiatsu, reiki and healing. The potential benefits include improvements in feelings of wellbeing, reduced anxiety, symptom control (e.g. pain, nausea, fatigue) and many more.

It many ways it is unsatisfactory to group the many complementary therapies into one description and the onus should be on providing good information and signposting to well established therapists who have appropriate qualifications and experience.

Chaplaincy

Chaplaincy services are available to all patients and seek to support people with their spiritual or religious needs. Chaplains are familiar with dealing with a range of spiritual concerns and are able to support people who have a belief system different to their own. Chaplains will often be able to signpost to other sources of support or faith leaders when this is appropriate.

The Mini Mental State Examination (MMSE)

By: Lenore Kurlowicz, PhD, RN, CS and Meredith Wallace, PhD, RN, MSN

WHY: Cognitive impairment is no longer considered a normal and inevitable change of aging. Although older adults are at higher risk than the rest of the population, changes in cognitive function often call for prompt and aggressive action. In older patients, cognitive functioning is especially likely to decline during illness or injury. The nurses’ assessment of an older adult’s cognitive status is instrumental in identifying early changes in physiological status, ability to learn, and evaluating responses to treatment.

BEST TOOL: The Mini Mental State Examination (MMSE) is a tool that can be used to systematically and thoroughly assess mental status. It is an 11-question measure that tests five areas of cognitive function: orientation, registration, attention and calculation, recall, and language. The maximum score is 30. A score of 23 or lower is indicative of cognitive impairment. The MMSE takes only 5-10 minutes to administer and is therefore practical to use repeatedly and routinely.

TARGET POPULATION: The MMSE is effective as a screening tool for cognitive impairment with older, community dwelling, hospitalized and institutionalized adults. Assessment of an older adult’s cognitive function is best achieved when it is done routinely, systematically and thoroughly.

VALIDITY/RELIABILITY: Since its creation in 1975, the MMSE has been validated and extensively used in both clinical practice and research.

STRENGTHS AND LIMITATIONS: The MMSE is effective as a screening instrument to separate patients with cognitive impairment from those without it. In addition, when used repeatedly the instrument is able to measure changes in cognitive status that may benefit from intervention. However, the tool is not able to diagnose the case for changes in cognitive function and should not replace a complete clinical assessment of mental status. In addition, the instrument relies heavily on verbal response and reading and writing. Therefore, patients that are hearing and visually impaired, intubated, have low English literacy, or those with other communication disorders may perform poorly even when cognitively intact.

MORE ON THE TOPIC:

Folstein, M., Folstein, S.E., McHugh, P.R. (1975). “Mini-Mental State” a Practical Method for Grading the Cognitive State of Patients for the Clinician. Journal of Psychiatric Research, 12(3); 189-198.

Foreman, M.D., Grabowski, R. (1992). Diagnostic Dilemma: Cognitive Impairment in the Elderly. Journal of Gerontological Nursing, 18; 5-12.

Foreman, M.D., Fletcher, K., Mion, L.C., & Simon, L. (1996). Assessing Cognitive Function. Geriatric Nursing, 17; 228-233.

The Mini-Mental State Exam

Patient___________________________________ Examiner ____________________________

Date____________

Maximum	Score

Orientation

5	( )	What is the (year) (season) (date) (day) (month)?

5	( )	Where are we (state) (country) (town) (hospital) (floor)?

Registration

3	( )	Name 3 objects: 1 second to say each. Then ask the patient

all 3 after you have said them. Give 1 point for each correct answer.

Then repeat them until he/she learns all 3. Count trials and record.

Trials ___________

Attention and Calculation

5	( )	Serial 7’s. 1 point for each correct answer. Stop after 5 answers.

Alternatively spell “world” backward.

Recall

3	( )	Ask for the 3 objects repeated above. Give 1 point for each correct answer.

Language

2	( )	Name a pencil and watch.

1	( )	Repeat the following “No ifs, ands, or buts”

3	( )	Follow a 3-stage command:

“Take a paper in your hand, fold it in half, and put it on the floor.”

1	( )	Read and obey the following: CLOSE YOUR EYES

1	( )	Write a sentence.

1	( )	Copy the design shown.

_____ Total Score

ASSESS level of consciousness along a continuum ____________

Alert Drowsy Stupor Coma

"MINI-MENTAL STATE." A PRACTICAL METHOD FOR GRADING THE COGNITIVE STATE OF PATIENTS FOR THE CLINICIAN.

Journal of Psychiatric Research, 12(3): 189-198, 1975. Used by permission.

A series provided by

The Hartford Institute for Geriatric Nursing

(hartford.ign@nyu.edu)

www.hartfordign.org

Permission is hereby granted to reproduce this material for not-for-profit educational purposes only, provided

The Hartford Institute for Geriatric Nursing, Division of Nursing, New York University is cited as the source.

Available on the internet at www.hartfordign.org. E-mail notification of usage to: hartford.ign@nyu.edu.

The word “carer” is used in its broadest sense and includes family, support workers, carers and others who support the patient