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When does the NHS pay for care?How to apply for NHS continuing healthcare in England and how to appeal if it is not awarded

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Introduction................................................................................................................................................................................1Aims of this guide .....................................................................................................................................................................2Healthcare and social care...................................................................................................................................................2Eligibility for NHS continuing care......................................................................................................................................2

Glossary of terms and resources used in this guide..................................................................................................3

Chapter 1What is NHS continuing healthcare and who can get it? ..........................................................................................7NHS continuing healthcare ..................................................................................................................................................8Primary health need................................................................................................................................................................8

Determining primary health need ................................................................................................................................9The Decision support tool (DST)...........................................................................................................................10Fast-track pathway tool ..........................................................................................................................................11

Difficulties for people with dementia ............................................................................................................................12

Chapter 2Assessments for NHS continuing healthcare ............................................................................................................13How to get an assessment................................................................................................................................................14Principles of the assessment...........................................................................................................................................14The assessment in brief .....................................................................................................................................................15Checklist screening ..............................................................................................................................................................15Multidisciplinary team (MDT) assessment...................................................................................................................16Consenting to the assessment .......................................................................................................................................17When and where assessments can take place.........................................................................................................17

Hospital ................................................................................................................................................................................17Care home...........................................................................................................................................................................18In a person’s own home .................................................................................................................................................19

Results of the assessment ...............................................................................................................................................20If NHS continuing healthcare is awarded ...............................................................................................................20

Periodic reviews after being found eligible.......................................................................................................21If NHS continuing healthcare is not awarded........................................................................................................22

NHS-funded nursing care........................................................................................................................................22Joint packages of health and social care .........................................................................................................22

Chapter 3Appealing against decisions and the complaints procedure ..............................................................................23Four steps to challenging an assessment decision ................................................................................................24Make sure you have a case................................................................................................................................................24

Evidence ..............................................................................................................................................................................25

Contents

Clinical commissioning group review.............................................................................................................................25Contacting the CCG for a review................................................................................................................................26Example of a letter to the CCG ...................................................................................................................................26The CCG’s response........................................................................................................................................................28

Independent review panel (IRP)........................................................................................................................................28Requesting an independent review from NHS England ...................................................................................28

Example of a letter requesting an independent review...............................................................................29The independent review panel....................................................................................................................................30

Making the most of your evidence to the IRP .................................................................................................30The review decision.........................................................................................................................................................31

If your review is upheld and NHS continuing healthcare is awarded......................................................31If you are unsuccessful and the original decision is upheld.......................................................................31

If NHS England refuses you an independent review panel ..............................................................................31The Parliamentary and Health Service Ombudsman .............................................................................................31

If the Ombudsman tells you to complain................................................................................................................32The NHS official complaints procedure .......................................................................................................................32

The letter of complaint ..................................................................................................................................................32

Appendices

Appendix 1 Some commonly asked questions........................................................................................................34

Appendix 2 Getting access to a person’s notes.......................................................................................................36Power of attorney ............................................................................................................................................................36When there is no attorney.............................................................................................................................................36The Mental Capacity Act ...............................................................................................................................................37Access under NHS continuing healthcare .............................................................................................................37As a last resort: deputies ..............................................................................................................................................37

Appendix 3 Examples of case law .................................................................................................................................38The Coughlan judgment 1999.....................................................................................................................................38The Pointon investigation 2003..................................................................................................................................38The Grogan case 2006 ...................................................................................................................................................39

Appendix 4 Further information and support, including NHS continuing healthcare in Wales and Northern Ireland...........................................................................................................................................40

Further information and support ..............................................................................................................................40Information on NHS continuing healthcare in Wales..........................................................................................41Information on NHS continuing healthcare in Northern Ireland ....................................................................41

References...............................................................................................................................................................................42Further reading.......................................................................................................................................................................43Notes ..........................................................................................................................................................................................44

Introduction

Finding out about what care you will have to payfor and what care is free is complicated, andapplying for free care can be time-consumingand often confusing. Getting information can bedifficult and the rules can be hard to understand.However, there is information and supportavailable to help you, and the rules should beapplied consistently across the country.

Aims of this guideThis guide explains the difference betweenhealthcare and social and personal care, andwhat this means for you in terms of whether you will have to pay for care. It then explainswhat NHS continuing healthcare is and theprocess of applying for it. This includes who iseligible for NHS continuing healthcare, how youmight be able to get it, and what to do if yourrequest for it is turned down.

This guide refers to documents, terms andresources that are commonly used in relation to NHS continuing healthcare. See a glossary ofthese on page 3. There are also references toAlzheimer's Society publications that go intomore detail on specific topics.

This guide only applies to people living inEngland. People in Wales and Northern Irelandshould look at Appendix 4 on page 40 fororganisations that can provide informationabout the rules in these countries.

Healthcare and social careThere are two organisations in the UK that areresponsible for providing care to meet people’sneeds – the NHS and local authority socialservices. Healthcare is provided by the NHS, and is free. Social and personal care is providedby local authority social services, and you mayhave to pay for it.

Social and personal care covers things likehelping someone to get dressed or atmealtimes, or supporting someone to get outand about. Healthcare covers things like treatingor controlling an illness, disability or injury.

Although healthcare and social care may seemto be separate things, it is sometimes difficult todistinguish what is healthcare and what is socialcare, particularly for people living with dementia.This is very important, because any decisionabout who is responsible for providing care canhave significant financial consequences.

Eligibility for NHS continuingcareApplying for NHS continuing healthcare can betime-consuming and complex, but it can beextremely beneficial if you are successful.However, it is important to understand that theNHS limits access to free care. Strict rules andcriteria are used to decide who can receive it.Many people with dementia will not meet thesecriteria and will therefore not be eligible.

2 When does the NHS pay for care?

When someone is living with dementia, their needs will change over time as their conditionprogresses. Some people will require a very high level of care and support to meet theseneeds. This might be provided in their own home or in a residential or nursing home.

Glossary of terms and resources used

in this guide

n Care needs portrayalA care needs portrayal is a document that amulti-disciplinary team (see below) cancomplete when carrying out an assessmentfor NHS continuing healthcare. It records aperson’s care needs and should be used aswell as, rather than instead of, the Decisionsupport tool (see below).

n Checklist and checklist screening The NHS continuing healthcare checklist(revised November 2012) is a ‘light-touchassessment’ document that is used to helpidentify people who may qualify for NHScontinuing healthcare assessment and whoshould then receive a full assessment (aprocess known as ‘screening’).

Top tipLearn the technical terms and jargonsurrounding NHS continuing healthcare. Theseterms are used frequently throughout thisdocument, and you will hear them a lot duringthe assessment process. Knowing what theymean will allow you to be involved indiscussions and understand the decisionsthat relate to your case.

n Clinical commissioning group (CCG)A clinical commissioning group is a local NHSbody that is responsible for providingservices in a particular area. It is responsiblefor carrying out assessments and makingdecisions about NHS continuing healthcare,as well as for providing and funding the careif it is awarded.

n The Decision support tool (DST) The Decision support tool for NHScontinuing healthcare (revised November2012) helps to bring together and recordevidence of a person’s care needs in onedocument. It is used by the assessor duringa full assessment, and helps to inform theirdecision about whether an individual iseligible for NHS continuing healthcare.

n Fast-track pathway tool The Fast-track pathway tool for NHScontinuing healthcare (revised November2012) is the assessment tool for determiningwhether a person is eligible to be fast trackedto receive NHS continuing healthcare whenthey are near the end of their life.


There are a number of key documents and resources that relate to NHS continuinghealthcare. Some of these are produced by the government and are available on theGOV.UK website at www.gov.uk/government/publications/national-framework-for-nhs-continuing-healthcare-and-nhs-funded-nursing-care. There are also a number ofprocesses, terms and phrases that you will hear a lot when applying for NHS continuinghealthcare. Use the list below as a reminder of what these refer to.

n The Framework The National framework for continuinghealthcare and NHS-funded nursing care(revised November 2012), which includesthe NHS continuing healthcare practiceguidance, is a long document produced bythe NHS. It describes the processes that allNHS agencies must follow when carryingout NHS continuing healthcareassessments.

n Independent review panel (IRP)An independent review panel is a body thatcan be set up to assess whether a CCG hasfollowed the correct procedures whenassessing someone for NHS continuinghealthcare. The IRP will tell the CCG of itsdecision, and the CCG should follow this.

n Lasting power of attorney (LPA)A Lasting power of attorney is a legal toolthat allows you to appoint someone tomake certain decisions on your behalf, if youreach a point where you cannot make themyourself. There are two types of LPA – onethat covers decisions about a person’sfinances and property, and one that coversdecisions about their health and welfare. Formore information see factsheet 472,Lasting power of attorney.

n Mental capacity‘Mental capacity’ is the ability for someone tomake a particular decision for themselves.For many people with dementia, there willcome a time when they no longer have thisability, and they are said to ‘lack capacity’.This can change for different decisions andat different times. If this happens, someonewill need to make decisions for them. Formore information see factsheet 460, MentalCapacity Act 2005.

n Multidisciplinary team (MDT)This is the team of people that carries out a full assessment for NHS continuinghealthcare. It must consist of at least twoprofessionals from different healthcareprofessions (such as GP, consultant orcommunity mental health nurse) or onehealthcare professional and one social careprofessional who is qualified in assessingpeople for care services. Other health andsocial care professionals involved in theperson’s care should also be included, wherepossible.

n NHS EnglandNHS England is the national body that runsthe NHS in England. It oversees localservices, such as hospitals and GPpractices, and it is also responsible forsetting up independent review panels.

5Glossary

n Nursing homeA nursing home provides personal care,much like a residential care home (seebelow), but also has a registered nurse onduty 24 hours a day. Some homes that areregistered for nursing care will acceptpeople with personal care needs who may need nursing care in the future.

n Practice guidanceThe NHS continuing healthcare practiceguidance is part of the Framework (seeabove). It is produced to supportpractitioners and others who implementNHS continuing healthcare to carry out their role correctly and follow the process.

n Primary health needA ‘primary health need’ is a key term that theDepartment of Health uses when it isdeciding who is eligible for NHS continuinghealthcare. If your needs are for healthcare,as opposed to social care, then you are saidto have a primary health need and youshould receive NHS continuing healthcare.

n Residential care homeA residential care home provides help withpersonal care such as washing, dressing andeating. In some residential care homes staffhave had specialist training in dementia care.


Chapter 1What is NHS continuinghealthcare and who can

get it?

NHS continuing healthcareNHS continuing healthcare is not a particulartype of care, treatment or support. It is thename given to a ‘package’ of care that theNHS provides to meet a person’s care needs.The Department of Health defines NHScontinuing healthcare in the Framework as:

‘a package of ongoing care that isarranged and funded solely by the NHSwhere the individual has been found tohave a ‘primary health need’ as set out inthis guidance. Such care is provided to anindividual aged 18 or over, to meet needsthat have arisen as a result of disability,accident or illness.’

This means that someone assessed as eligiblefor NHS continuing healthcare (often referred to as CHC) will have all the care that they needpaid for by the NHS. This package of care can be provided in a care setting or in a person’s own home, and will meet all their assessedneeds. This includes what is normally calledsocial care.

For someone in a care home, continuinghealthcare funding covers both residential costs and food. For someone receiving NHScontinuing healthcare in their own home, social care will be included in the package, but additional costs such as rent, utility bills and food will need to be paid for. In somesituations the NHS may pay a contributiontowards a person’s utilities if they need specialequipment in order to meet their needs at home that may increase their bills.

If a person is assessed as not eligible for NHScontinuing healthcare, they may be expected topay for the social care they receive. The localauthority will carry out a financial assessmentand a means test. This is when they look at aperson’s savings and income to decide how muchthey are able to pay. Depending on the results ofthe means test, the local authority may fundsome or all of their care. For more information seefactsheets 532, Paying for care and support inEngland, and 473, Personal budgets.

Primary health needTo help decide which treatment and otherhealth services the NHS should provide (andpay for) and which services local authoritiesmay provide (and may charge for), NHS Englanduses the idea of a ‘primary health need’. Thisidea comes from case law – law that isestablished by the decisions made in previouscourt cases. For more information on how theprimary health need idea came about, see The Coughlan judgment 1999 in Appendix 3 onpage 38.

Top tipNHS England has produced a film about NHScontinuing healthcare and the assessmentprocess which you can find online atwww.england.nhs.uk/ourwork/pe/healthcare


This chapter explains what NHS continuing healthcare is, who is eligible to get it, and howdecisions about a person’s eligibility are made. For information about the assessmentprocess itself, see chapter 2, Assessments for NHS continuing healthcare.

If a person’s primary care need is forhealthcare – that is, if they have a ‘primaryhealth need’ – then the NHS is responsible forproviding for all of their needs, and they areeligible for NHS continuing healthcare. This can include social care, such as personal care,if it is part of the overall need. If a person’sneeds change and they no longer have aprimary health need, funding for NHScontinuing healthcare can be removed.

If a person is assessed as needing social care,rather than healthcare, then they will not beeligible for NHS continuing healthcare. Instead,they will receive care provided by socialservices, and this may need to be paid for.

Any decision about whether someone is eligiblefor NHS continuing healthcare must be basedonly on their care needs. Their financialsituation, or any financial constraints faced bythe CCG, should not affect their eligibility. Norshould the setting in which the person is beingcared for or their relationship to the personwho cares for them. For example, it doesn’tmatter if they live at home and their carer is afamily member rather than a healthprofessional.

The diagnosis of a particular disease orcondition, such as dementia, cannot in itself entitle someone to NHS continuinghealthcare. A person’s needs alone willdetermine whether or not they are eligible.

Determining primary health need A person’s needs will be assessed to decide(‘determine’) whether or not they have aprimary health need. The CCG’s continuinghealthcare co-ordinator or, if the person is inhospital, other medical staff, will arrange thisassessment. All assessments should follow theprocedure as it is set out in the Framework.Health and social care staff involved in theperson’s care should identify when anassessment is required, but this does notalways happen.

The assessment may take place in two stages. This is explained fully in chapter 2. If a full assessment takes place – often thesecond stage of the process – the CCG will use the Decision support tool (DST) to helpdetermine whether someone has a primaryhealth need. If the person is nearing the end of their life, the CCG will use the Fast-trackpathway tool.

Top tipCreate a medical history for the person youcare for. This will be useful when they arebeing assessed for NHS continuinghealthcare, and in challenging a decision, ifnecessary. Keep this medical history regularlyupdated.

9What is NHS continuing healthcare and who can get it?

The Decision support tool (DST)

The Decision support tool (DST) is the key toolused to record a person’s care needs, and tohelp determine whether or not they have aprimary health need. It has been developed sothat assessments for NHS continuinghealthcare are carried out as consistently aspossible across the whole country.

The DST aims to bring together and record aperson’s needs within these 12 ‘care domains’or types of need:

1 behaviour (for example, aggression or lackof inhibition)

2 cognition (for example, learning disability)3 psychological/emotional needs (for

example, distressing hallucinations oranxiety)

4 communication5 mobility (for example, risk of falls, inability

to bear their own weight)6 nutrition – food and drink (for example,

difficulty swallowing)7 continence8 skin, including tissue viability (for example,

pressure ulcers)9 breathing (for example, emphysema or

chest infection)10 drug therapies and medication: symptom

control (for example, help administeringmedication)

11 altered states of consciousness (forexample, coma)

12 other significant care needs.

A person’s needs in each domain are assessed,and scored as low, moderate, high, severe orpriority. Not all five scores will apply in alldomains. For a full explanation of each domainsee the notes that accompany the Decisionsupport tool.

It is important that these 12 areas of needare not looked at in isolation, and that aperson’s needs in each of these areas arelooked at in relation to the following keyindicators:

n Nature – the characteristics of theperson’s needs (which can includephysical health, mental health orpsychological needs), their effect on theperson and the type and quality oftreatment they need.

n Complexity – how different symptomsinteract to make the care the personneeds more complex.

n Intensity – both the quantity and theseverity of the person’s needs and thesupport they need to meet them,including the need for sustained orongoing care.

n Unpredictability – whether unexpectedchanges in the person’s condition occur,the extent of these changes, and howthis affects their level of risk and careneeds. This also relates to the level of riskto the person’s health if they do notreceive the care they need.


The completed DST should outline exactly whatcare needs the person has, in each differentarea, and in relation to the four key indicators.This information is then used to inform thedecision about whether the person has aprimary health need, and is therefore eligible forNHS continuing healthcare.

The summary sheet in the DST says thateither of the following would indicate a primaryhealth need:

n priority needs in any one of the fourdomains that carry this level (ie behaviour,breathing, drug therapies and medication,and altered states of consciousness), or

n two or more severe needs across all caredomains.

The DST goes on to state that where there is:

n one domain recorded as severe, togetherwith needs in a number of other domains,or

n a number of domains with high and/ormoderate needs, this may also, dependingon the combination of needs, indicate aprimary health need.

It is important to note that there are very few needs or combinations of needs thatdefinitely add up to a primary health need, and these will only apply to some people. For many people, it will be the combination of a number of lower level needs that mean theyhave an overall primary health need, but thereis no clear definition of where the line is. Inthese cases, the DST is only a guide, and it issometimes hard to say when a person’s needsconstitute a primary health need. This canmake the assessment process complicatedand uncertain.

The DST says all factors that affect a person’scare needs must be taken into account indeciding whether a person is eligible for NHScontinuing healthcare. This includes how theperson’s different care needs interact, theiroverall need and any risk assessment evidence.

It is important to remember that the DST isonly a tool that informs decision making. Itdoes not give any absolute criteria, rule or setof rules that say what amounts to a primaryhealth need. Each person’s needs will bedifferent and the DST must be used as a toolonly, and not simply as a tick-box exercise. Itis designed to gather and presentinformation from the assessment in a waythat assists consistent decision-making.

Fast-track pathway tool

People who are nearing the end of their life,specifically those with a ‘rapidly deterioratingcondition that may be entering a terminalphase’, may be assessed as having a primaryhealth need. They may urgently need NHScontinuing healthcare funding – for example, to allow them to go home to die or to allowend-of-life support to be set up. In these cases,the Fast-track pathway tool should be used toassess their needs.

However, doctors often cannot accurately saywhen a person with dementia is nearing theend of life, unless they have another conditionas well. This means that the Fast-trackpathway can be hard to apply to people withdementia.

11What is NHS continuing healthcare and who can get it?

Difficulties for people withdementiaThe way the NHS defines a 'primary healthneed' can make it difficult for people withdementia (as well as people with some otherconditions) to be found eligible for NHScontinuing healthcare.

Each of the 12 needs in the DST has a number of possible weightings, but some needs cannotbe weighted as highly as others. For example,‘psychological and emotional needs’ and‘communication’ do not have a severe rating but ‘behaviour’ and ‘altered states ofconsciousness’ do. This may make it harder for people with dementia to be found eligible.

Top tipBefore an assessment, get a copy of all thedocuments that relate to the assessmentprocess, including the Framework and theDecision support tool. Use them to do yourown assessment of a person’s needs. Thedocuments are available on the gov.ukwebsite.

This is particularly true if the tool is not appliedcorrectly. The Framework makes it clear thatboth the quality and quantity of care the personneeds should be taken into account whendeciding if they have a primary health need. For example, a large number of low-levelnursing care needs could mean that someonecannot be left unsupervised and requires24-hour care. This may not necessarily implythat they are eligible for NHS continuinghealthcare, but it might.

You should also remember that a need shouldnot be discounted just because it is beingsuccessfully managed – a well-managed needis still a need. It can sometimes be the casethat, because a need is being well managed, it is not rated as highly as it should be in theassessment. If a person has a high level ofneed, it should be rated as such, even if theneed is being successfully met.


Chapter 2Assessments for NHScontinuing healthcare

If you are not happy with the outcome of an assessment you can work through theappeal and review process (see chapter 3,Appealing against assessments and thecomplaints procedure), on page 23.

How to get an assessment It is the CCG’s responsibility to assess a person’s needs if there is a possibility of thembeing found eligible for NHS continuinghealthcare. If you are unsure whether anassessment has been carried out, or if you want to request one, contact your local CCGand ask for the NHS continuing healthcareco-ordinator. You can find out the name of this co-ordinator at your local GP surgery orthrough your local patient advice and liaisonservice, known as PALS. You can find PALS and your local CCG atwww.nhs.uk/servicedirectories

You should ask the CCG for information aboutthe process and when it will begin. You shouldalso tell the CCG that you wish to participatefully in and contribute to the assessment, andask them to give you all the information you willneed. This includes the Framework and theDecision support tool.

Principles of the assessmentThere are a number of principles that shouldunderpin any assessment for NHS continuinghealthcare.

n Assessments should be organised so that theperson who is being assessed and their familyand/or carers understand the process, andreceive the advice and information they needto take part in the assessment anddiscussions about their future care.

n The person being assessed should give theirfull consent to the assessment before itbegins. If the person lacks the mentalcapacity to give consent, someone may needto make the decision for them. For moreinformation about when and how this is donesee factsheet 460, Mental Capacity Act 2005.

n NHS continuing healthcare is available in anysetting, so the assessment can also becarried out in any setting, including theperson’s own home.

n The assessment should take into account the person’s wishes about how and wherecare is to be delivered, and these should bedocumented.

n The assessment and decision-makingprocess must be based on a person’s healthneeds, not on their diagnosis.

n The assessment and decision-makingprocess should be person-centred.

n Decisions – and the reasons for them –should be clear and transparent for everyoneinvolved, and should be available in writing.

n All decisions will be culturally sensitive andclient-centred.

To find out whether someone is eligible for NHS continuing healthcare, they must havetheir needs assessed by their CCG. This chapter explains how this assessment is done,including the different stages of the assessment, how it is carried out, and any difficultiesyou may have.


15Assessments for NHS continuing healthcare

The assessment in briefThe assessment process may have two stages.The first part is known as a Checklist screening.This is a light touch assessment to identifypeople who might be eligible for NHS continuinghealthcare. If this stage shows that someonemay be eligible, they will then have a fullassessment. The full assessment is carried outby a multidisciplinary team of professionals,using the Decision support tool. Some peoplemay not have the Checklist screening and maygo straight to the full assessment.

For people whose condition is rapidly becomingworse and who are near the end of their life,doctors or nurses may use the Fast-trackpathway tool to enable them to receive careurgently , removing the need for the checklist or full assessment using the DST.

The Framework makes it clear that:

n the CCG must keep the person’srepresentative or carer fully informed at all stages of the assessment

n the result of any decision must berecorded in the patient’s notes

n the decision (including the reasons why the decision was reached) should be sent, in writing, to the individual or theircarer or representative, as soon as isreasonably practicable

n the CCG must explain to the person or their family how to ask for a review if they are not happy with the result of the assessment.

Checklist screeningThe Checklist screening will be carried out by anurse, doctor, social worker or other qualifiedhealthcare professional. Each local CCG andlocal authority decides who can complete theChecklist, and these people should be trainedin how to use it.

If the Checklist screening shows that theperson may be eligible for NHS continuinghealthcare, a full assessment must be carriedout. The full assessment is referred to as amultidisciplinary team (MDT) assessment in theFramework, though you may occasionally hearsome people refer to it as a Decision supporttool or DST assessment.

If it is decided at the Checklist stage that theperson does not require a full assessment, the CCG should clearly communicate this to the person, as well as their carers orrepresentatives. The person or their carer can still request a full assessment and the CCG must fully consider this request.

It is important to remember that the Checklisthas a fairly low threshold so although lots ofpeople may meet the criteria at this stage,many of those who go on to have a fullassessment will not be found eligible for NHScontinuing healthcare.

Top tipGood record keeping is essential. Record the date, time, contact person and briefsummary of all conversations with staff fromyour CCG, hospital, GP, care home, socialservices etc about the needs of the personyou care for.


Multidisciplinary team (MDT)assessmentA multidisciplinary team assessment is the fullassessment for NHS continuing healthcare andis carried out by a team of people. The aim ofthis assessment is to consider someone’sphysical, mental, psychological and emotionalneeds, to build a complete picture of their careneeds.

In order to carry out an MDT assessment, theCCG will identify someone, or more than oneperson, to co-ordinate the process. This personwill take responsibility for the assessment rightup until the decision about funding has beenmade and a care plan has been written.

The key health and social care professionalsinvolved in the person’s care should contributeto this assessment, ideally as part of the MDT. If a professional cannot be part of the MDT theycan at least be asked to provide evidence tocontribute to the assessment.

The Practice guidance defines an MDT as:

i) two professionals who are from different healthcare professions, or

ii) one professional who is from ahealthcare profession and one personwho is responsible for assessingindividuals for community care servicesunder section 47 of the National HealthService and Community Care Act 1990.

This means that a minimum of either twohealthcare professionals, or a healthcareprofessional and someone from the NHS orthe local authority, will form the MDT. TheFramework makes it clear that the MDTshould usually include health and social careprofessionals who are knowledgeable aboutthe individual’s needs. This may be in additionto the two mandatory MDT members.

The MDT’s task is to look at all of the evidenceabout a person’s care needs, use the Decisionsupport tool to record their findings, and makea recommendation to the CCG as to whetherthe person has a primary health need. The CCGshould follow this recommendation, except inexceptional circumstances.

In addition to the Decision support tool, a careneeds portrayal (sometimes called an individualneeds portrayal) may also be completed duringthe assessment. Care needs portrayals varyfrom one CCG to another (and some localauthorities produce them too), but they shouldall offer an enhanced level of information aboutthe person’s needs. They should not be usedinstead of the Decision support tool, but ratheralongside it to aid the collection of evidence.

During the process, you may find it useful tocompare what the Framework and Practiceguidance says with the input from the MDT.There is a section in the Decision support toolthat allows the person’s carer or representativeto say what they see as the person’s careneeds, and to have their views recorded. It isvery important that you use this opportunity.

Remember that a need should not bediscounted in the assessment process justbecause it is being successfully managed.Well-managed needs are still needs andshould be considered as such. For moreinformation on this see page 12, Difficultiesfor people with dementia.


Consenting to the assessmentThe person being assessed for NHS continuinghealthcare should give their informed consentbefore the assessment begins, if they are ableto. If the person lacks the ability to do this(known as ‘mental capacity’), the healthprofessionals carrying out the assessmentshould follow the code of practice set out in theMental Capacity Act 2005. For moreinformation see factsheet 460, MentalCapacity Act 2005.

A person may choose a family member or otherperson (who should be independent of the localauthority or NHS) to represent them during anassessment. This might be the person’sattorney under a Lasting power of attorney, forexample. Even where someone does not have a legal power, such as Lasting power ofattorney, the person or people carrying out the assessment should take into account theviews and knowledge of representatives.

Top tipYou should try to take part in assessmentmeetings and understand which documentshave been used as evidence. For example,have the care home or hospital notes beentaken into account?

When and where assessmentscan take placeAn assessment for NHS continuing healthcarecan be carried out anywhere, including ahospital, residential or nursing care home, or inthe person’s own home.

HospitalIf someone is leaving hospital and going into acare home, or will need a significant amount ofcare after leaving, the hospital should considerwhether the person should have an NHScontinuing healthcare assessment. TheFramework says that the local authority shouldnot be asked to take over responsibility for theperson (and carry out an assessment of theircare needs to plan their care) until the need foran assessment has been considered.

The Framework also says that before an NHSbody, such as a hospital, passes on the detailsof someone it wants to discharge to a localauthority (LA) social services department, it:

‘must take reasonable steps to ensure that anassessment for NHS continuing healthcare iscarried out in all cases where it appears to thebody that the patient may have a need forsuch care. This should be in consultation, asappropriate, with the relevant LA.’

In other words, a hospital should not dischargesomeone with dementia without consideringwhether or not they need NHS continuinghealthcare. ‘Considering’ normally involvescarrying out a Checklist screening, possiblycarrying out a full assessment of the person’sneeds, or even fast-tracking, where necessary.However, the Framework makes it clear thatdoing an assessment in hospital does notalways give a true picture of how much care anindividual really needs, and it is sometimes

appropriate to discharge the person fromhospital and perform the assessment at a laterdate.

The Framework also states that, if possible,‘NHS staff should get social servicescolleagues involved in these assessments’. This is good practice because it enables asocial worker who is familiar with the person to contribute to the assessment. In addition, ifthe person is found not to be eligible for NHScontinuing healthcare, or if their needs changein the future, social services may be involved in providing their care and so should be fullyinformed of the situation. The Framework alsowarns that local authorities ‘should not allow anindividual’s financial circumstances to affect adecision to participate in any joint assessment’.

This means that many people with dementialeaving hospital should be considered for NHScontinuing healthcare. However, in reality, fewpeople have this explained to them and few aretold when or how they can ask to be assessed.

For more information about what a hospitalmust do when discharging someone see Theassessment in brief, on page 15. For furtherinformation on the hospital discharge processsee factsheet 477, Hospital care.

Top tipCertain circumstances should trigger at leasta Checklist screening for NHS continuinghealthcare, such as being discharged fromhospital, or moving into a care home. If youdon’t think a Checklist screening has beencarried out, or you are not sure, you shouldalways ask whoever is in charge of theperson's care.

Care homePeople moving into nursing homes shouldautomatically be considered for NHScontinuing healthcare. However, this is notalways the case and people’s needs are oftennot adequately identified.

If someone is receiving NHS continuinghealthcare in a care home, this will be reviewedat least once a year. If someone is not currentlyreceiving NHS continuing healthcare but isreceiving registered nursing care in a carehome, the Checklist screening should becompleted as part of the annual review of theirregistered nursing care. If the Checklistscreening shows they may be eligible for NHScontinuing healthcare, they will then have a fullassessment.

It has often been assumed that people inresidential care homes (as opposed to nursinghomes) are not eligible to receive NHScontinuing healthcare. This assumption wasbased on the view that people with the mostserious medical conditions and complex carearrangements would be cared for in a nursinghome, rather than a residential home.

In fact, there are many people in residentialhomes with complex medical conditions whomay be eligible for NHS continuing healthcare.However, because of the way their needs areassessed, it may not be easy for them toreceive it.



In a person’s own homeSomeone who is living and being cared for athome can be assessed for NHS continuinghealthcare there. To get an assessment, youshould request this from a nurse, doctor, otherhealthcare professional, social worker, or yourlocal CCG continuing healthcare team.

The details of your CCG can be found on theNHS choices website – see page 41 for thewebsite address. If you cannot find the detailsof the continuing healthcare team, ask ahealthcare professional involved in the person’scare for details.

For people who are found eligible and receiveNHS continuing healthcare in their own home,there are new ways of arranging care using apersonal health budget. For more informationsee factsheet 473, Personal budgets.

Getting NHS continuing healthcareat homeSomeone can be eligible for NHS continuinghealthcare funding to cover the costs of theircare at home. However, as with people inresidential care, it is sometimes wronglyassumed that those with the most seriousmedical conditions would be cared for in anursing home. This means it can be hard forsomeone cared for at home to be foundeligible.

Sometimes, people who should be eligible for NHS continuing healthcare at home willwrongly be charged for their care. Thishappened in the case of Malcolm Pointon and his wife Barbara. When the Parliamentaryand Health Service Ombudsman reviewed the case in her 2004 report, she found thatMalcolm and his wife had been paying forcare at home that should have been availableon the NHS.

If you have problems getting the NHScontinuing healthcare you feel you deserve as a result of being cared for at home, youmay want to quote the Pointon case as anexample in your correspondence. For moredetails of this important case see Appendix 3on page 38.

Results of the assessmentThe CCG should inform you of the outcome ofthe assessment, with a clear explanation of itsreasons within 28 days, both verbally and inwriting.

If you disagree with the decision, you can say so. Ask for all the paperwork relating to theassessment, including the completed Decisionsupport tool, so that you can show exactlywhere you disagree with their findings. Yourrequest, along with any additional informationyou might want to provide, should be consideredfully. For more information on what to do if you disagree with a decision, see chapter 3,Appealing against decisions and the complaintsprocedure.

Even if you have been successful, make sure you receive a copy of all the relevant paperwork,including the completed Decision support tool.This can be helpful in future, especially if NHScontinuing healthcare is withdrawn at a laterdate.

Top tipWhen applying for, or challenging, a decisionon NHS continuing healthcare, you should putyour case in writing and keep a record of allcorrespondence.

If NHS continuing healthcare isawardedIf someone is successful and receives NHScontinuing healthcare, they do not have to payany of the costs of that care. The NHS pays thewhole cost. The care can be provided in anysetting, whether the person is in a nursing home,a residential care home, or their own home.

If found eligible, the person or their carer orrepresentative will need to let the disabilitybenefits centre know, see Appendix 4 on page 40 for details. Getting NHS continuinghealthcare might affect whether or not a personcan get other benefits.

If someone is receiving NHS continuinghealthcare, their Disability living allowance,Personal independence payments andAttendance allowance will be affected. If theircarer receives Carer’s allowance, this may alsobe affected. A person’s state pension willcontinue as before. Pension credit might beaffected though.

If you are unsure about anything to do withbenefit entitlements, contact your localbenefits office, Citizens Advice or Age UK – see Appendix 4, Further information andsupport, on page 40 for details.

Some people who are awarded NHS continuinghealthcare may already be living in a care home.If the CCG does not normally pay for services inthat particular home, it will need to talk to carehome staff to make sure the person’s careneeds can be properly met there. Sometimesthe CCG might want to move the person toanother home where it funds care and hasavailable beds.



The CCG might also want to move the personto another home where their needs can be metat a lower cost. Sometimes the support theperson prefers will be more expensive thanother options. Although cost is an importantconsideration, the person's preferences andneeds shold be the starting point for agreeingtheir care and where it is provided.

If you disagree with the care that is offered, tryto solve the problem locally by discussing it withyour CCG. If you are not successful, you may beable to complain. For more information seechapter 3, Appealing against decisions and thecomplaints procedure, on page 23.

Periodic reviews after being found eligible

A person’s eligibility for NHS continuinghealthcare is reviewed regularly. This is knownas a ‘periodic review’. Even when someone has been through the complex assessmentprocess and has been found eligible, their casewill be reviewed three months after the initialdecision and then annually after that. It will alsobe reviewed if the person’s care needs change.

It is not unusual for people who have complexhealthcare needs to have their continuinghealthcare funding removed after a periodicreview. You can appeal against this decision. For more information about how to appeal seechapter 3.

If the CCG decides to remove funding, you willhave to cover the costs of providing care. Iftheir decision is overturned in the future, anycosts you have paid in the interim will bereimbursed, but it is important to think abouthow you would meet these costs should thefunding be removed at any stage.

For more information about meeting carecosts, see factsheet 532, Paying for care andsupport in England.

If NHS continuing healthcare is not awardedIf a person is not awarded NHS continuinghealthcare, they may still be able to get othertypes of funding to help with the cost of theircare.

NHS-funded nursing care

Someone receiving care in a nursing home maybe able to receive NHS-funded nursing care.This is not a fully-funded package of care likeNHS continuing healthcare but is a set amount,paid by the NHS to the person’s nursing home,to go towards the cost of their registerednursing care.

The eligibility criteria for NHS-funded nursingcare are lower than those for NHS continuinghealthcare. This means that a person may beeligible for NHS-funded nursing care, even ifthey are not awarded NHS continuinghealthcare.

Someone who moves into a nursing homeshould automatically be assessed forNHS-funded nursing care. They should alwayshave an assessment for NHS continuinghealthcare first, and only if this is not awardedshould they be considered for NHS-fundednursing care.

The NHS-funded nursing care contributionshould be paid straight to the person’s nursinghome. This means it is often difficult for peopleto know whether they are receiving it. If you areunsure, you should ask the nursing home for awritten breakdown of how the fees are beingcovered.

To decide who will meet the costs not beingcovered by NHS-funded nursing care, the localauthority will carry out a financial assessment.This is to decide how much the person cancontribute to their own care and how much, ifanything, will be paid by the local authority. Formore information see factsheet 532, Paying forcare and support in England.

Joint packages of health and social care

Another option for people who are not awardedNHS continuing healthcare is a joint package ofcare. This is a package of care that is funded byboth the NHS and the local authority.

A joint package of care may be appropriatewhere someone has nursing or other healthneeds that are not significant enough to be aprimary health need, but are too great to becovered by the NHS-funded nursing carecontribution. There are not many examples ofjoint packages at the moment, but the numberbeing awarded is likely to increase.

A joint package of care might also be an option ifthe person has some healthcare needs, but theyare not enough to be considered a primaryhealth need. This is because the local authorityis not legally allowed to provide some types ofhealthcare. If this is the case, the person’s needswill need to be met by both the NHS and thelocal authority.

The costs of a joint package of care are decidedby the CCG and the local authority together.They will make this decision by considering theperson’s needs and what the local authority canlegally provide. Each CCG and local authorityshould have an agreement on how they deal withjoint packages of care.


Chapter 3Appealing against decisions

and the complaintsprocedure

Four steps to challenging anassessment decisionIn order to appeal against a decision on NHScontinuing healthcare eligibility you should followthese four steps. If you are successful at anystage, you will not need to carry out the nextsteps.

1 Prepare your case. You need to work outwhether you have grounds for appeal andwhat they are, and find evidence to back upyour case.

2 Ask the CCG to review your case. Explainwhy you want your case reviewed and whyyou think the person is eligible for NHScontinuing healthcare.

3 If the CCG decides you are still not eligible,you can request a review from anindependent review panel (IRP). It will be ableto investigate the CCG’s decision and makea judgment on it.

4 If you disagree with the outcome of the IRP,you can take your case to the Parliamentaryand Health Service Ombudsman. They havethe power to make a number of decisionsabout your case.

Top tipGo and see the records yourself at thehospital rather than asking for them to besent to you by post. If you request them viapost you may not be sent all the informationavailable.

Make sure you have a caseIf, after a full assessment, you are unhappy withthe decision not to offer a full assessment, orfeel the outcome of a full assessment is notright, you can appeal against the decision, butyou must make sure you have grounds to do so.

Before appealing, it is important to considercarefully whether you might have a case. Itcannot just be your general view that the wrongdecision was made, there must be specificreasons. You should get hold of all the relevantdocuments and have solid reasons to ask foryour case to be reviewed. Doing some researchwill save you a lot of time pursuing anunsuccessful appeal.

If you feel you have grounds for appeal and havenot already done so, get a copy of the completedDecision support tool from the CCG and ask themfor an explanation of how the decision wasreached. Be clear about your grounds forchallenging the decision.

Note that an appeal is not an option if you wishto challenge:

n the actual criteria used for the assessmentn the type and location of any offer of

NHS-funded continuing healthcare servicesn the content of any alternative care package

offeredn the treatment or any other aspect of the

services someone is receiving or has received.

Any of the above would be dealt with by thecomplaints procedure. For more about theNHS official complaints procedure seepage 32.

If you think someone with dementia has been charged for care that should have been provided byNHS continuing healthcare, you may be able to appeal. This chapter explains the different steps youwill need to take to appeal and how to make a complaint if you are not happy with the care you havebeen offered.


25Appealing against decisions and the complaints procedure

EvidenceHaving as much documentary evidence aspossible will help you to make a strong case.You might want to look at the care needsportrayal (sometimes called an individual needs portrayal) and work out whether it wasused to support the Decision support tool and the overall decision. You should also ask for social services, care home and NHS patientrecords.

If you are asking for a review to look back over a period of time, look for copies of oldassessments and reports showing the level of needs at that time. Care plans and notes,including any daily progress records from theperson’s care home, may also be useful. Your own notes on the person’s medical history and needs will also be useful.

Top tipRequest medical records from various bodiesinvolved in the person’s care, such as thehospital or GP. Social services may havecarried out assessments that contain usefulinformation. Ask to see any reports that thelocal authority has about the person.

File all the information you gather. Forexample, you might want to get a folder andfile information under different headings,such as care home notes, nursing homenotes, NHS continuing healthcareassessments, care plans, letters and yourcomments.

For more information on how to access aperson’s medical notes see Appendix 2,Getting access to a person’s notes on page 36.

Clinical commissioning group reviewOnce you have identified the grounds for yourappeal and put together any documentaryevidence to back it up, you will need to ask theCCG to review its original decision.

n You must write to the CCG within six monthsof receiving their decision and say that youwant a review of the assessment (see below).In some cases, if you have good reason formissing the initial six-month deadline, youmay still be able to ask for a review.

n The CCG has five working days toacknowledge in writing that it has receivedyour request, and it must also provide youwith information on the NHS continuinghealthcare appeal process.

n The CCG must deal with your request,complete its review and make a furthereligibility decision within three months ofreceiving your request. If there is a delay, itmust inform you in writing and explain thereason for the delay.

Information about the review process, along withtimescales for review, should be available to thepublic. It is important to note that different CCGsmay have different processes – for example,some CCGs refer appeals to a neighbouring CCGto look at. You should ask your CCG for details ofhow it deals with appeals.

You should write to the chief executive of theCCG to request a review. You can find out thechief executive’s name and address by looking at the CCG’s website or the NHSChoices website (see Appendix 4, Furtherinformation and support, on page 40).Alternatively, you can speak to social services or your NHS continuing healthcare

co-ordinator. A sample letter is shown overleaf.In your letter, ask the CCG for a review of theNHS continuing healthcare decision, and ask itto reconsider the way that the criteria havebeen applied.

Your letter to the CCG might look somethinglike the example shown below.


Insert in thissection thedetails of theperson onwhose behalfyou are complaining.The followingis an example.

Add this sentence ifthe personbeing caredfor is in a residentialhome or theirown home.

DateYour address

Dear [name of chief executive]

I wish to appeal the decision of my mother’s continuing healthcareassessment.

I believe that my mother, [name, date of birth, NHS number] has beenwrongly refused NHS continuing healthcare.

Below are the reasons I believe that the wrong conclusion has been reached.I attach/enclose the relevant documents. [Include this sentence if you areincluding documents supporting your argument].

My mother is in the late stages of [type of dementia] and is cared for at the[name of nursing home/residential home/in her own home]. She can nolonger [set out her needs, for example: communicate verbally but her erraticbehaviour suggests that she is often very distressed and the staff struggleto care for her. She is doubly incontinent, has mobility problems and is at riskof falls. She is also diabetic, is losing weight and has pressure sores.]

You will be aware that the Department of Health has stated that people canreceive NHS continuing healthcare whether they are in a nursing home,residential care home, or their own home.

The basis of my request is that I believe my mother meets the criteria.

Please progress this review and update me as soon as possible.

Yours sincerely[Your name]

Contacting the CCG for a review

Example of a letter to the CCG


Use this part of your letter to explain why youthink the person meets the criteria for NHScontinuing health care. Be brief – details aboutthe person’s condition should be in their notes.Some aspects that may be important forpeople with dementia (they may apply to otherpeople too) are given below. This is not anexhaustive list. You will probably be able to thinkof other aspects that apply to your particularcase.

Emotional and psychological needs Health professionals often argue that, once a person with dementia has become too ill to display behaviour that is difficult tomanage, they no longer have any emotional or psychological needs. However, theParliamentary and Health ServiceOmbudsman did not accept this argument inher investigation into the case of MalcolmPointon (see page 38).

When making your case, you should thinkcarefully about how the person’s psychologicalneeds affect them, for instance:

n Does the person have panic attacks or fits?

n Does the person become easily frightened,and do everyday care tasks have to becarried out in particular ways to takeaccount of psychological factors?

n Does the person have hallucinations?

PredictabilitySome people assume that the needs of aperson with advanced dementia arepredictable and can be managed with only the occasional visit from the district nurse(except in nursing homes). You should thinkcarefully about whether this is true. Make a list of issues the person has that areunpredictable and require an immediateresponse. These may include thepsychological needs described above.

Quantity of healthcare needsNo one should be denied NHS continuinghealthcare because they do not require highlyspecialised care (see The Coughlan judgment1999, page 38). You should record the care thatthe person requires during an average 24-hourperiod. It may be a good idea to do this on anumber of occasions and keep a diary, thencompare the outcomes to give a true pictureof the care a person may require.

Medication Think carefully about any issues surrounding aperson’s medication.

n What level of monitoring of medication doesthe person need?

n Are there issues about the side effects ofmedication that also require monitoring?

n Are there complicated issues aroundadministering medication? (For example,does the person require injections thatmust be given by a professional?)

IncontinenceAlong with incontinence, are there additionalissues that need to be taken into accountwhen someone is incontinent? These couldinclude their increased susceptibility to urinarytract infections and skin breakdown.

Mobility issuesMobility issues can be more difficult forsomeone with dementia. For example,transferring a person using a hoist can bemore complex and difficult for someone withdementia than for someone who does nothave dementia. This is because a person withdementia may not be able to understandwhat is happening and therefore doesn'tco-operate. You could argue that moving aperson with dementia requires skilled carebeyond the basic manual handling trainingthat you would expect from a professionalcare assistant.


The CCG’s responseThe CCG should respond promptly to your letter.If you have not heard anything after one month,phone the CCG to ask about the progress ofyour review.

In most cases, the CCG’s first step will be toattempt a local resolution, which will usually be handled by a CCG review panel. Sometimes, a CCG may refer the review to a neighbouring CCG so that the decision-making process isimpartial.

If the CCG says you have no case, you might be unhappy with its decision. This might bebecause of the way it has followed proceduresor applied the Decision support tool. In thiscase, the next stage is to ask NHS England to consider your case for review by anindependent review panel (IRP). You can request an IRP yourself, or the CCG may decide to call one.

Independent review panel(IRP) An IRP is a body with an advisory role that is setup by NHS England. It can look at whether theCCG correctly applied the Framework, andwhether it followed the processes set out in thePractice guidance. The IRP can then make arecommendation as to whether the CCG’sdecision is valid. The CCG should accept theIRP’s recommendation in all but extreme cases.

Requesting an independent reviewfrom NHS EnglandTo request an independent review by an IRP, youmust send a letter to NHS England explainingyour reasons for disagreeing with the CCG’sdecision and why you are asking for anindependent review.

You should also write another brief letter to theperson at the CCG who responded to you,telling them that you are not happy with thedecision and want an independent review ofyour case. You should tell them that you haveread the Framework and the associatedassessment tools. You should also say that youbelieve that you are wrongly paying, or havepaid, for care that should have been availableon the NHS. There is a sample letter you canuse on the next page.


In your letter – see example below – you shouldwrite briefly about the person’s condition. Youmight want to point out any issues that youmentioned in your original request for a reviewfrom the CCG, especially any that you feel havenot been picked up or have been ignored.

Top tipWhen applying for, or challenging, a decisionon, NHS continuing healthcare, you shouldput your case in writing and keep a record ofall correspondence.

Dear [name of CCG contact]

The [name of the CCG] has reviewed the case of mymother [name, date of birth, NHS number], who lives at[name of nursing home/residential home/in her ownhome.]

I am not satisfied with its findings and wish to request anindependent review of the case.

Please let me know if and when a review of my case willtake place and give me details of when I can attend.

Yours sincerely, [Your name]

Put here your reasons for not being satisfied with the original decision that you are not entitledto fully funded care. You might want to refer back to the information in the sample letter onpage 26, and consider the reasons outlined in this guide as to why people are often refusedfunding for NHS continuing healthcare.

Example of a letter requesting an Independent review

The independent review panelOnce NHS England has received your request, it will consider all the information and decidewhether or not to convene an IRP to review thecase. If it decides not to, it should send you aletter explaining its reasons.

The IRP will talk to a number of people whenlooking at a case. It should ask the person’sfamily or carer for their views, even if they haveno legal power to act on the person’s behalf. Itshould also have access to independent clinicaladvice. It should talk to all of the people involvedin the case, including the person with dementia,health and social services staff and any otherrelevant people. These people are all able toattend the panel, or alternatively they can puttheir views in writing.

If a person finds it difficult to present their ownviews, the Framework says that they may havea representative present at the IRP. This mightbe a relative, carer or advocate. The panel must be satisfied that the representative isaccurately representing the person’s views and has no conflict of interests.

If you would like an independent advocate tohelp you at this stage, ask your local PALS(patient advice and liaison service). You can find details of your local PALS atwww.nhs.uk/servicedirectories

The IRP must keep the person’s representativesfully informed about the process and how long itis expected to take. If the person is alreadyreceiving care funded by the NHS, local authority,or both, they should continue to do so until thepanel reaches a decision about their eligibility forNHS continuing healthcare.

The panel must share information with somepeople. These include a person’s registeredLasting power of attorney (LPA) for health and

welfare, or a court-appointed deputy for welfare,if they have one. It should also share informationwith the individual’s representative, if this is inthe person’s best interests. There are rulesabout what information can be shared and withwhom, but the aim of these rules is to make theprocess and the decisions as transparent aspossible.

Top tipTry to attend all assessments and appeal orreview hearings, for example an independentreview panel.

Making the most of your evidence to the IRP

It is important to make a strong case if you areattending a review panel. The best way to dothis is to explain why you think the personshould be receiving NHS continuing healthcareby comparing the individual’s health needs withthe specific eligibility criteria and the caredomains of the Decision support tool.

Look again at the list on page 27 that suggeststhings to think about when writing to a CCG.Write down what you want to say and practisesaying it before the meeting. Try to get copiesof notes from anyone involved in the person’scare – for example, their GP, consultant, socialservices and any relevant care home records.

Even if you think you can manage without anindependent advocate, you should think abouttaking someone with you to provide moralsupport and to discuss events with afterwards.It might also be useful to take notes of what thepanel says and the questions they ask. This isanother role that a friend or supporter mighttake on for you.


The review decision

If your review is upheld and NHS continuinghealthcare is awarded

If the IRP agrees that the person being cared forshould receive NHS continuing healthcare, it willtell your CCG. The CCG should then write to youexplaining this decision.

If you are unsuccessful and the originaldecision is upheld

If the IRP decides that your case is not valid, and agrees with the CCG’s original decision, youwill have to decide if you are satisfied with thisoutcome. If you are not, you need to think aboutwhether you have a good enough case toproceed to the next stage. If you do, then youcan refer your case to the Parliamentary andHealth Service Ombudsman. For moreinformation on this, see below.

If NHS England refuses you anindependent review panelIt is very unusual for NHS England to uphold theCCG’s original decision and refuse a review by an IRP. The Framework says that this can onlybe done if NHS England considers that the‘individual falls well outside the eligibility criteriaor where the case is very clearly not appropriatefor the panel to consider’.

Top tipIf you think you have a strong case for NHScontinuing healthcare, be persistent. It can bedifficult and frustrating, but many peoplewith dementia are awarded NHS continuinghealthcare funding.

If this happens, you are entitled to write to theParliamentary and Health Service Ombudsmanand ask for your complaint to be looked at.

The Parliamentary and HealthService OmbudsmanThe Parliamentary and Health ServiceOmbudsman is an independent body that can investigate complaints against somegovernment departments, a range of publicbodies in the UK, or the NHS in England. TheOmbudsman can investigate complaints thatthese organisations have not acted properly or fairly, or that they have provided a poorservice, as long as the complainant (the person making the complaint) has tried toresolve the issue locally first.

You can contact the Ombudsman because you have been refused an IRP, or because theIRP upheld the CCG’s original decision. TheOmbudsman will be able to look at your case,focusing on whether the correct processes and procedures were followed.

They will write to acknowledge your complaintwithin two working days of receiving it. If theOmbudsman decides to investigate yourcomplaint, they will explain the process to you.The Ombudsman recommends that people firstcall their helpline to check that they have areasonable case and that they have tried toresolve the complaint as far as possible. Thehelpline number can be found on page 41.

The Ombudsman has the power to make anumber of different decisions about your case.They can decide to grant you NHS continuinghealthcare, but there are also a number ofother possible outcomes. They will explainthese to you, if they decide to investigate yourcase.


If the Ombudsman decides not to investigateyour complaint further, they will explain to youwhy they have come to that decision.

In some circumstances, the Ombudsman mayask a CCG to review a case again. The CCG mayeven be asked to go back to the start of theassessment process if an obvious mistake wasfound in the way processes were carried out.

If the Ombudsman tells you tocomplainSometimes, the Ombudsman will tell people to go through the local NHS complaintsprocedure. This is not the same as asking the CCG for a review of the person’s need forNHS continuing healthcare, nor is it the same as the IRP.

This may seem like a backward step, but if the Ombudsman has identified an issue thatneeds to be looked at through the complaintsprocess, it is important that you follow thecorrect process to get the best results.

Top tipBe aware that the Parliamentary and HealthService Ombudsman has the final say if youhave exhausted the local complaints system.It is important to have good records in orderto make an effective case to theOmbudsman.

The NHS official complaintsprocedureThe complaints procedure deals with all kinds of complaints about the NHS, not just NHScontinuing healthcare. You might want tocomplain because you have been told to by the Ombudsman, because you are unhappywith the criteria used for the assessment, orbecause you are unhappy with the treatmentthat you have been offered (see Make sure you have a case, page 24).

The letter of complaintWrite to the chief executive of the CCG in whichthe person is being cared for. The process isessentially the same as writing to the CCG to request a review of an NHS continuinghealthcare decision, except that you mustspecifically state that you are making an officialcomplaint.

You can use a version of the letter requestinga review (see page 26). However, you maywant to adapt it to include anything else youhave learnt during the appeal process. Besure to state that you are making an officialcomplaint. This ensures that your letter isdealt with according to the NHS complaintsprocedure.

Keep a copy of the letter and allcorrespondence that follows it. From thispoint on, you should follow the complaintsprocess using the notes in this document asyou would if you were requesting a reviewfrom the CCG.

Eventually, if your complaint is not resolved, you may get to the Ombudsman again. TheOmbudsman will either investigate your case or advise you what to do next.


Appendices

Q Is it true that people with dementiaautomatically receive free care?

A No. Nobody receives free care purelybecause of their diagnosis of dementia (orany other condition). Some people withdementia may qualify for free NHScontinuing healthcare, but only if theirprimary need is for healthcare as opposedto social care.

Q If someone is told that they are not eligible for NHS continuinghealthcare, can the person appealagainst that decision, if theydisagree?

A Yes, if the person or their representativethinks they have good reason to questionthe decision. There is a process, startingfirst with the CCG, where the person ortheir representative can say that theydisagree with the decision and why. They can ask the CCG to review thedecision and consider it again.

Q My relative is well cared for, andbehaviour that some peoplepreviously found challenging hasreduced because staff in the nursinghome are skilled and understand hisneeds. When his needs werereviewed and a new assessmentcarried out, the assessor said thathis needs had changed and hisbehaviour was no longer at ‘priority’level. This means that his continuinghealthcare funding will be removed.Is this acceptable?

A No. A need such as this, even if it is beingwell managed, is still a need. If the skilledcare is removed it is highly likely that thechallenging behaviours will return. TheFramework says:

‘The decision-making rationale should not marginalise a need justbecause it is successfully managed:well-managed needs are still needs. Only where the successful managementof a healthcare need has permanentlyreduced or removed an ongoing need […] will this have a bearing on NHScontinuing healthcare eligibility’


Appendix 1Some commonly asked questions

Q Do I need a solicitor to appeal thecontinuing healthcare decision?

A No. It is not necessary to use a solicitor toappeal a continuing healthcare decision,though if your case is very complex youmay want to do so. The information in thisguide will help you to conduct your ownappeal.

Alzheimer’s Society has a group ofexperienced and trained volunteers whocan help guide you through the continuinghealthcare appeals process. Thevolunteers are only able to help with caseswhere a decision has already been reachedby the CCG, but the person disputes thedecision and believes that they havegrounds for appeal. Call the NationalDementia Helpline on 0300 222 1122 formore information.

Q If NHS continuing healthcare isawarded because my relative has aprimary health need, does that meanall of their care will be paid for by theNHS for the rest of their life?

A No, NHS continuing healthcare is not alifetime award. A person is only eligiblewhile they have a ‘primary health need’, sothere will be regular assessments and‘periodic reviews’ to check whether aperson’s needs have changed. But as longas they continue to be assessed as havinga primary health need, their care will be fullyfunded by the NHS, and this will cover allhealth and social care costs.

However, it is not unusual for people to befound eligible and then, when reassessed,their needs are found to have changed andcontinuing healthcare funding is removed.For example, if a person exhibitedbehaviours that challenge and was foundeligible because of this, but thesebehaviours lessen as their mobility isreduced, they may lose their continuinghealthcare funding.

35Appendix 2 – Getting access to a person’s notes

As a rule, if someone decides in advance thatthey wish you to have access to their files, theyshould always write a clear instruction givingtheir consent. Often, however, people withdementia are not able to give such consent. For more information see the Data ProtectionAct 1998. The Information Commissioner can also advise about access to data – seeAppendix 4, Further information and support,on page 40.

Power of attorneyIf someone has completed and registered aLasting power of attorney (LPA) for propertyand financial affairs or an Enduring power ofattorney (EPA), the nominated person or‘attorney’ has the legal power to make financialdecisions on their behalf. However, an attorneycan only access the person’s medical notes forfinancial reasons. If the attorney thinks that theperson is entitled to NHS continuing healthcare,this should be considered to be a financialreason.

If someone has completed and registered anLPA for health and welfare, the attorney has the legal power to make decisions that relate tothe person’s care and welfare. Attorneys withthis power should be able to access a person’smedical records, as often this is needed forthem to carry out their role.

For more information about Lasting powers of attorney, as well as the previous Enduringpower of attorney, see factsheet 472, Lastingpower of attorney.

When there is no attorneyGetting access to a person’s medical notes canbe harder for you if the person with dementiahas not made an EPA or LPA. Some NHS bodiesand social services departments are willing torelease a personal file to a person’s main carer,particularly if that carer is a close relative.However, this is not always the case.

The reasons given for refusing access usuallyinvolve either or both of the following:

n there is no legal right of access for anyoneother than the patient

n the authority has a duty of confidentiality tothe person.

This is not the whole story, however. The lawrequires the public and private interests inmaintaining confidentiality to be weighedagainst the public and private interests indisclosure. This means that the authority inquestion (for example the NHS body or socialservices) must decide whether it is of morebenefit to give someone access to the person’snotes or not. What they decide will depend onthe specific circumstances of the case and thebest interests of the individual.

It will probably be necessary for you to have access to a person’s medical records if youwant to appeal a decision relating to NHS continuing healthcare on their behalf. However,rules about patient confidentiality and data protection make it difficult to get access toanother person’s medical or social services notes.


Appendix 2Getting access to a person’s notes

37Appendix 2 – Getting access to a person’s notes

The Mental Capacity ActThe Mental Capacity Act (2005) is the law thatprotects and supports people who do not have the ability to make certain decisions forthemselves, known as ‘mental capacity’. Itexplains who can make decisions for a personwho lacks capacity and states that they must do so in the person’s best interests.

The Act requires health and social care staff to consult anyone caring for the person orinterested in their welfare (for example family,friends and unpaid carers) when deciding ontheir best interests. As a result, it should bemuch easier for carers to access medical notes and social services records of people with dementia, even if that person has notappointed a lasting power of attorney.

For more information see factsheet 460, MentalCapacity Act 2005.

Access under NHS continuinghealthcareThe Framework also gives people who have nolegal power – such as an LPA or deputyship (see As a last resort: deputies) – certain rights tobe able to access personal information, whichmay include medical records. It states that whendeciding whether to share information with athird party who doesn’t have a legal power, theprofessional involved must decide whether thefollowing criteria are met:

n Any decision to share information must be inthe individual’s best interests.

n The information which is shared should onlybe that which is necessary in order for thethird party to act in the individual’s bestinterests.

If someone can show that these criteria are met,it should be possible for them to accesspersonal information, such as medical records,in order to apply for NHS continuing healthcare.

The Framework also makes it clear that if thereis an appeal, information can be shared withthird parties. It states that:

‘There are a number of situations where athird party may legitimately be giveninformation so long as the above principlesare followed. Some common examplesinclude:

n someone making care arrangements whorequires information about the individual’sneeds in order to arrange appropriatesupport;

n someone with an LPA (finance), deputyship(finance) or a registered Enduring power ofattorney (EPA) looking to challenge aneligibility decision, or any other personacting in the person’s best interest tochallenge an eligibility decision.’

As a last resort: deputiesSome people will not have appointed anattorney, and will now not be able to becausethey lack capacity. If they need decisions madeon their behalf that can only be decided by acourt case, you will need to apply to the Court ofProtection to become a deputy. A deputy issomeone appointed by the Court of Protectionto deal with a specific issue or range of issueson behalf of someone who lacks capacity andwho does not have an attorney.

For more information see factsheet 530,Becoming a deputy for a person with dementia.

The Coughlan judgment 1999 A decision about who provides care can havesignificant financial consequences forindividuals with long-term health needs andtheir families. The Coughlan judgment cameabout because a clearer definition of the linebetween the responsibility of the NHS andsocial services for people’s long-term care wasneeded. This landmark case affected the waythe law was interpreted and how the NHS andlocal authority social services took on theresponsibility.

This case was brought by Pam Coughlan. She was left seriously physically disabled after a car accident. Her care was funded bythe NHS until her nursing home was closed and responsibility for her care transferred tosocial services. She pursued a case against the NHS to secure NHS continuing healthcare,which went all the way to the Court of Appeal.

The court had to consider where the line shouldbe drawn between long-term care that is thelegal responsibility of the NHS and long-termcare that is the legal responsibility of socialservices. It ruled that because Pam Coughlanhad a ‘primary health need’, her care was theresponsibility of the NHS. It decided thatalthough social services could provide nursingcare, it can only do so when it is ‘merelyincidental or ancillary’ to the provision ofaccommodation, and of a nature that a socialservices authority can be expected to provide.

The Pointon investigation 2003A person’s eligibility for NHS continuinghealthcare should depend only on their careneeds, and not on where they are living or who is providing the care. It is sometimes wronglyassumed that if a person is being cared for athome, their need is for social care rather thanhealthcare. The Pointon case was a landmarkbecause it demonstrated that a person livingand receiving care at home can have ahealthcare need, and therefore can be eligiblefor NHS continuing healthcare.


Three significant cases brought before English law have defined the principles upon whichNHS continuing healthcare decisions are made. The circumstances and key findings ofthese are summarised below.

Appendix 3Examples of case law

The case was brought by Barbara Pointon, carer of her husband Malcolm, who hadadvanced dementia. Having become concernedabout his deterioration while in a nursing homeshe decided that he should be cared for athome. As Malcolm’s dementia progressedhowever, he was unable to access healthcareservices. Barbara Pointon applied for NHScontinuing healthcare for Malcolm, but he wasfound ineligible. She believed that the primarycare trust (PCT) – the equivalent of today’sCCG – had unfairly applied the assessmentcriteria and imposed conditions that wereimpossible to meet at home, such as thefrequent intervention of a trained nurse. As aresult, she took the case to the Parliamentaryand Health Service Ombudsman.

The Ombudsman found that the guidance had not been properly followed because theassessment was too focused on physical needs and not psychological needs. Importantly,it also found that Barbara Pointon was providinga high level of personalised care and that thiswas equal to, if not superior to, that which hewould have received in a nursing home. TheOmbudsman concluded that the assessmenthad been carried out incorrectly and thatMalcolm Pointon did have a healthcare need and was eligible for NHS continuing healthcareat home.

The Grogan case 2006The procedures and criteria for NHS continuinghealthcare should be consistently appliedacross the country. However, there was nonational policy for NHS continuing healthcareand NHS-funded nursing care until the Grogancase in 2006.

Mrs Grogan, resident of a nursing home, hadthree times been assessed as not eligible forNHS continuing healthcare. She was receivingthe (then) top band of Registered nursing carecontribution (RNCC). She argued this wasunlawful, since the criteria that had been appliedin her case were contrary to the judgment in theCoughlan case. The judgment in her favourinfluenced the government to put in place anational policy.

This policy required the then PCT to look at thetotality of a person’s needs before making adecision on their eligibility for NHS continuinghealthcare. It also stated that just becausesomeone’s needs were being met throughNHS-funded nursing care, this didn’t mean they may not be eligible for NHS continuinghealthcare, and that anyone whose needs were equal to or greater than Ms Coughlanshould be entitled to fully funded NHS care.

39Appendix 3 – Examples of case law


Age UK0800 678 1174 (advice line, 8am–7pm daily)[email protected]

Charity providing information and advice forolder people in the UK.

Citizens AdviceVarious locationswww.citizensadvice.org.uk

Citizens Advice offers free, confidential, impartialand independent advice to help people resolveproblems with debt, benefits, employment,housing and discrimination. To find your nearestCitizens Advice, use the website above or look inthe phone book.

Court of ProtectionPO Box 70185 First Avenue House 42–49 High Holborn London WC1A 9JA0300 456 [email protected]/courts-tribunals/court-of-protection

The Court of Protection is a specialist court forall issues relating to people who lack capacity tomake specific decisions for themselves.

Disability Service Helplinewww.gov.uk/disability-benefits-helpline

Attendance allowance (AA)0345 605 6055

Disability living allowance (DLA)If you were born on or before 8 April 1948 – 0345 605 6055If you were born after 8 April 1948 – 0345 712 3456

Personal independence payment (PIP) 0345 850 3322

Provides information and advice aboutAttendance allowance, Disability living allowanceand Personal independence payment. All phonelines open 8am–6pm weekdays.

Independent Age0800 319 6789 (Free advice line 8am–8pmMonday–Friday, 9am–1pm Saturday)[email protected]

Charity offering free advice and information oncare, benefits and social support, as well asvolunteer befriending services for older people.

Appendix 4Further information and support,including NHS continuing healthcarein Wales and Northern Ireland

Further information and support

41Appendix 4 – Further information

Information Commissioner’s OfficeWycliffe House, Water LaneWilmslow, Cheshire SK9 5AF0303 123 1113 (helpline, 9am–5pmMonday–Friday)www.ico.org.uk

Independent UK body that upholds informationrights. It can offer support and advice onaccessing a patient’s notes.

NHS Choiceswww.nhs.uk/service-search

NHS website that allows you to search for healthservices near you, including the details of everyclinical commissioning group in England.

Office of the Public GuardianPO Box 16185 Birmingham B2 2WH0300 456 [email protected]/government/organisations/office-of-the-public-guardian

The Office of the Public Guardian supports andpromotes decision-making for those who lackcapacity or would like to plan for their future,within the framework of the Mental Capacity Act2005. It provides free booklets on Enduring andLasting powers of attorney and deputyship.

Parliamentary and Health ServiceOmbudsmanMillbank Tower30 MillbankLondon SW1P 4QP0345 015 4033 (helpline, 8.30am–5pmMonday-Friday)www.ombudsman.org.uk

Makes final decisions on complaints that havenot been resolved by the NHS in England, UKgovernment departments and other UK publicorganisations.

Information on NHS continuing healthcare in Wales

NHS Waleswww.wales.nhs.uk

NHS website that allows you to search for healthservices in Wales.

Age Cymru08000 223 444 (advice line, 9am–5pmMonday–Friday) www.ageuk.org.uk/cymru

Charity providing information and advice forolder people in Wales.

Information on NHS continuinghealthcare in Northern Ireland

Age NI0808 808 7575 (advice line, 8am–7pm daily)www.ageuk.org.uk/northern-ireland

Charity providing information and advice forolder people in Northern Ireland.

Health and Social Care in NorthernIrelandonline.hscni.net/

Website that allows you to search for health andsocial care services near you.

42

National framework for NHS continuing healthcare and NHS-funded nursing care. Department ofHealth (2012).

NHS continuing healthcare checklist. Department of Health (2012).

Decision support tool for NHS continuing healthcare. Department of Health (2012).

Fast-track pathway tool for NHS continuing healthcare. Department of Health (2012).

These four documents set out the principles and processes of the National Framework. They can all be found online at: www.gov.uk/government/publications/national-framework-for-nhs-continuing-healthcare-and-nhs-funded-nursing-care [accessed 20 October 2017]

The National Health Service Commissioning Board and clinical commissioning groups(responsibilities and standing rules) regulations 2012. The Stationery Office (2012). [online] Available at: www.nhs.uk/choiceintheNHS/Rightsandpledges/Waitingtimes/Documents/nhs-england-and-ccg-regulations.pdf [accessed 20 October 2017]

The National Health Service Commissioning Board and clinical commissioning groups(responsibilities and standing rules) (amendment) regulations 2013. The Stationery Office. (2013).[online] Available at: www.legislation.gov.uk/uksi/2013/2891/pdfs/uksi_20132891_en.pdf [accessed20 October 2017]

References

www.nhs.uk/choiceintheNHS/Rightsandpledges/Waitingtimes/Documents/nhs-england-and-ccg-regulations.pdf

www.gov.uk/government/publications/national-framework-for-nhs-continuing-healthcare-and-nhs-funded-nursing-care

43

NHS continuing healthcare and NHS-funded nursing care: Public information leaflet (2013) London: Department of Health. Available at: www.gov.uk/government/uploads/system/uploads/attachment_data/file/193700/NHS_CHC_Public_Information_Leaflet_Final.pdf [accessed 20 October 2017]

NHS continuing healthcare: Independent review panels (2014) London: NHS England. Available at: www.england.nhs.uk/wp-content/uploads/2014/05/irp-leaflet.pdf [accessed 20 October 2017]

Continuing healthcare. A short film explaining the continuing healthcare system. NHS England.Available at: www.england.nhs.uk/ourwork/pe/healthcare [accessed 20 October 2017]

Complaints about continuing healthcare funding. Parliamentary and health service Ombudsman.Available at: www.ombudsman.org.uk/make-a-complaint/complaints-about-continuing-healthcare-funding [accessed 20 October 2017]

What is NHS continuing healthcare? Easy-read leaflet.Available at: www.gov.uk/government/uploads/system/uploads/attachment_data/file/328377/NHS_CHC_easy_read.pdf [accessed 20 October 2017]

Further reading

www.gov.uk/government/uploads/system/uploads/attachment_data/file/193700/NHS_CHC_Public_Information_Leaflet_Final.pdf

www.england.nhs.uk/wp-content/uploads/2014/05/irp-leaflet.pdf

www.gov.uk/government/uploads/system/uploads/attachment_data/file/328377/NHS_CHC_easy_read.pdf

44

Notes

Alzheimer’s Society 43–44 Crutched FriarsLondon EC3N 2AE

0330 333 [email protected]

Code 813

Alzheimer’s Society is the UK’s leading dementia charity. We provide information and support, improve care, fund research, and create lasting change for people affected by dementia.

If you have any concerns about Alzheimer's disease or any other form of dementia, visit alzheimers.org.uk or call the Alzheimer's Society National Dementia Helpline on 0300 222 1122.(Interpreters are available in any language. Calls may be recorded or monitored for training and evaluation purposes.)