Continuing Healthcare - should the NHS be paying for your care?

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1 Guide Guide 27 Continuing Healthcare - should the NHS be paying for your care? This guide explains when it is the duty of the NHS to assess your health needs for NHS continuing healthcare. It covers what NHS continuing healthcare is, how eligibility is worked out, how to make an application for this funding and what to do if you are unhappy with the decision made. Our free advice service offers expert independent advice on social care, welfare benefits, and befriending schemes. Call to arrange an appointment to speak to one of our advisers or advice@independentage.org All our free guides and factsheets can be ordered by phone or (as above) or downloaded from

2 Contents What is NHS Continuing Healthcare? Page 3 What entitles you to receive NHS Continuing Healthcare? Page 4 What is a primary health need? Page 6 How to work out if you are eligible Page 8 Assessment of your needs Page 11 So who qualifies? Page 14 What if I have mental health needs rather than physical health needs? Page 16 End-of-life care Page 18 Can I choose where my care is provided? Page 19 How long does NHS Continuing Healthcare last? Page 21 What if it is decided that I am not eligible for NHS Continuing Healthcare? Page 22 Requesting an Independent Review Page 24 Refunds Page 28 Making a retrospective application for NHS Continuing Healthcare funding Page 30 What is an NHS nursing care payment? Page 32 Personal Health Budgets Page 33 Can I pay more to choose a care home of my choice? Page 34 Effect on benefit entitlement Page 37 Caring for someone who receives NHS Continuing Healthcare Page 39 Making your case Page 40 Guide 27: Continuing Healthcare - should the NHS be paying for your care? 2

3 1 What is NHS Continuing Healthcare? Most people who need help to pay for their care get some financial help from their council's social services. However, if you have complex health care needs, which lead you to have a primary health need, the NHS is responsible for solely arranging and paying for the full cost of your fees (including the accommodation if that is part of your needs). This is because the care needed is beyond the responsibility of the council's social services. This care can be provided for a period of time to a person aged 18 or over, to meet needs that have arisen as a result of disability, accident or illness. The care can be offered in any setting. Guide 27: Continuing Healthcare - should the NHS be paying for your care? 3

4 2 What entitles you to receive NHS Continuing Healthcare? How you qualify for NHS Continuing Healthcare varies according to where you live in the UK, as different guidance applies in England, Scotland and Wales. Eligibility criteria in England Your eligibility depends on whether your primary need for care is a health need. There is no legal definition of a health need, but for the purpose of NHS Continuing Healthcare it has been defined as: one related to the treatment, control or prevention of a disease, illness, injury or disability and the care or aftercare of a person with these needs (whether or not the tasks involved have to be carried out by a health professional). The National Framework [1] for NHS Continuing Healthcare and NHS-funded Nursing Care was created to explain who qualifies for this assistance. NHS England and local area Clinical Commissioning Groups (CCG) have responsibility for NHS continuing healthcare and must follow this guidance. Eligibility criteria in Scotland In Scotland, the most recent guidance [2] was published by the Scottish Government in February The main factor within the current guidance is to consider whether a person s current needs are primarily health needs. Any decision about eligibility in Scotland should be made using local criteria based on the principles of the national guidance. It should take place after an assessment by a multidisciplinary team under the Single Shared Assessment Guide 27: Continuing Healthcare - should the NHS be paying for your care? 4

5 approach. For more information on Single Shared Assessments, see our guide, Assessment and services from your local council in Scotland (Guide 50). For more information on Continuing Healthcare in Scotland, contact the Age Scotland Helpline - run by the Silverline ( , ageuk.org.uk/scotland). Eligibility criteria in Wales The National Framework for NHS Continuing Healthcare 2010 [3] aims to make sure that the eligibility criteria is interpreted in the same way across the country. You can contact Age Cymru ( , ageuk.org.uk/cymru) for more information. [1] gov.uk/government/publications/national-framework-fornhs-continuing-healthcare-and-nhs-funded-nursing-care [2] available from sehd.scot.nhs.uk/mels/cel2008_06.pdf [3] The Welsh National Framework is available at wales.gov.uk/docs/dhss/publications/100614chcframeworke n.pdf Guide 27: Continuing Healthcare - should the NHS be paying for your care? 5

6 3 What is a primary health need? The differences between health care (care provided by the NHS) and social care (care provided by the council) sometimes make it difficult to clearly define what a primary health need is. The difference is important because NHS services are free but social care is charged for, or means tested. The following 'indicators' are considered when deciding if you have a primary health need : - The nature of your condition: This can refer to the features of your particular condition(s) and how it is managed on a daily basis. Or it could refer to the type of medical help needed to manage your condition(s), which might include invasive treatment or medication. - The intensity of your condition: This might refer to a chronic condition which requires a certain type or level of care to manage and reduce risk. It could also mean aggressive behaviour that presents a significant risk to self or others which needs to be managed. A mixture of lower level needs could also increase the intensity. - The complexity of your needs: Your needs might be complex as a result of the combination of a number of symptoms. Complexity can also refer to the extent of treatment needed for a single condition or multiple conditions which require urgent or timely intervention. - The unpredictability of your needs: This covers the degree to which your needs fluctuate, creating a level of risk to your health if adequate and timely care is not provided. Someone with an unpredictable healthcare Guide 27: Continuing Healthcare - should the NHS be paying for your care? 6

7 need is likely to have a fluctuating, unstable or rapidly deteriorating condition. You may have a primary health need based on one of these indicators alone, or on a combination of these indicators due to the type of care, and/or the amount of care required to meet your needs. Types of healthcare needs can include any of the following: - unpredictable and challenging behaviour - mood disturbance and hallucinations - being immobile and needing to be carefully moved - being doubly incontinent of urine and faeces, and requiring regular monitoring to minimise risk - having multiple wounds needing daily monitoring and reassessment - needing artificial intervention to take in food and drink, or having difficulty in swallowing - being at risk of malnutrition or dehydration - having difficulty breathing and may need mechanical support - experiencing pain which is difficult to manage. These examples (alone or together) do not automatically qualify as primary health needs. Deciding whether you have a primary health need involves looking at your actual day-to-day care needs, or any nursing or other health services that you require, to see if the majority of the care that you need is focused on addressing and/or preventing health needs. Guide 27: Continuing Healthcare - should the NHS be paying for your care? 7

8 4 How to work out if you are eligible Often people do not know about NHS continuing Healthcare, so NHS bodies must ensure that an assessment is carried out in all cases where it appears that the person concerned may have a need for such care. Your local NHS Clinical Commissioning Group (CCG) should make information about this is available and accessible to anyone who needs it. To decide if you meet the criteria for NHS Continuing Healthcare in England, the Tools, as set out in the National Framework, must be used. The Tools cannot be changed, amended or shortened in any way, so that all decision making is done in the same way. The Tools include: - the Checklist - the Decision Support Tool - the Fast Track Pathway Tool. The first step will be a screening process using the NHS Continuing Healthcare Checklist [4], unless the Decision Support Tool or the Fast Track Pathway Tool is more appropriate. Step one: Checklist for eligibility The purpose of the Checklist is to work out whether or not you are likely to qualify for NHS continuing healthcare, and whether you need to have a full assessment. The criteria on the Checklist is intentionally set low to ensure that help is directed towards those most likely to be eligible for NHS Continuing Healthcare. Guide 27: Continuing Healthcare - should the NHS be paying for your care? 8

9 A nurse, doctor, other qualified healthcare professional, a social worker or a social care assistant can apply the Checklist. The professional involved should have received some level of training to use the Checklist and be familiar with the National Framework guidance. You can have an advocate or carer with you when this is taking place, to make sure that your views and wishes are taken into account. Whatever the outcome, a copy of the completed Checklist and the decision about whether you can have an NHS continuing healthcare assessment, together with the reasons for it, should be put in writing to you, your carer (where appropriate), and your CCG as soon as possible. If you are refused an assessment For many people, it may be clear from the outset that they are not likely to qualify, so no assessment will be carried out. However, you can still request an assessment, especially if you have new or additional information to support your case. If this is denied, or you do not meet the Checklist criteria, you should be told: - that you have a right to ask your CCG to reconsider their decision - how to make a complaint, using NHS complaints procedures (see chapter 10). Checklist and hospital discharge If you are in hospital, the process of getting NHS continuing healthcare is likely to be speedier, especially if you are in an acute hospital bed. However, other NHS services, such as Guide 27: Continuing Healthcare - should the NHS be paying for your care? 9

10 intermediate care or rehabilitation, may be temporarily provided before carrying out the Checklist or the full assessment. This may be so that the professional staff are able to make a reasonable judgement about your ongoing needs. While other NHS services are being provided, your CCG remains responsible for meeting your assessed needs and funding your care. After the Checklist has been completed If you are referred for a full assessment for NHS Continuing Healthcare after the Checklist has been completed, the CCG must consult with the council's social services department (where possible) before making a decision about whether you qualify. This is because the council should provide your CCG with information from any recent care needs assessments you have had. These will be used as evidence of your health, care and support needs and will eventually be included on the Decision Support Tool. Good to know The social care needs assessment should take into account accurate and up-to-date information about all of your needs, including asking any appropriate specialists (depending on your needs) for supporting evidence of your needs, for example, a Psychiatrist or Tissue Viability Practitioner. If your care has previously been arranged by the mental health team, the Care Programme Approach (normally carried out for people with long-term mental health needs) may be used as evidence of your needs before completing Guide 27: Continuing Healthcare - should the NHS be paying for your care? 10

11 the full assessment for NHS Continuing Healthcare, using the Decision Support Tool. For more information on the needs assessment, see our guide Assessment and services from your local council in England (Guide 12). [4] gov.uk/government/uploads/system/uploads/attachment_d ata/file/127200/nhs-chc-checklist-final.pdf Guide 27: Continuing Healthcare - should the NHS be paying for your care? 11

12 Step two: Assessment of your eligibility using the Decision Support Tool Once the appropriate needs assessment has been completed, your CCG co-ordinator will arrange your assessment for NHS continuing healthcare. Your assessment will be carried out by a multidisciplinary team. This team will be made up of two or more people, usually from both health and social care backgrounds. This could be a: - medical consultant or doctor - ward nurse or specialist nurse - psychiatric nurse - speech and language therapist - occupational therapist - social worker or another social care professional. You and/or your carer should be fully involved in the assessment where your needs are discussed. This includes having your views and wishes taken into account for your future care, recorded with the help of a carer or independent advocate if you need this support. The assessment should be carried out with your knowledge and consent, and you and your carer should also be provided with advice and information to help you understand the process. For more information about independent advocacy and when you may find it useful, see our Guide 25: Independent Advocacy, or call us on How the assessment works Guide 27: Continuing Healthcare - should the NHS be paying for your care? 12

13 The multidisciplinary team must use the Decision Support Tool to make their decision about whether you qualify. This involves filling in a special form designed to make sure that they take all relevant factors into account. Your needs should be recorded under the 12 different care domains on the form: - *Behaviour (for example, challenging behaviour that may require a skilled response) - Cognition (how able are you to understand and process information and the impact that this has) - Psychological and emotional needs (mood disturbance, hallucinations, anxiety or wellbeing) - Communication (how able you are to express your needs) - Mobility (your ability to walk or move about without support) - Nutrition (what care you need to ensure you get enough food and drink) - Continence both urine and bowel (including the management of incontinence) - Skin tissue viability (open wounds, risk of pressure sores or skin breakdown) - *Breathing (ability to breath independently or with support) - *Drug therapies and medication (management of medication/ pain including the ability to manage its safe use) - *Altered states of consciousness (changes in a person s mental state or brain activity which could include delirium, panic, coma, trauma) - Other significant care needs (any other needs). Under each of these care domains, the multidisciplinary team should decide whether your needs are: Guide 27: Continuing Healthcare - should the NHS be paying for your care? 13

14 - none - low - moderate - high. For some of the care domains, but not all, your needs can also be categorsied as 'severe' or as 'priority'. * These are the only care domains where you care needs can be considered 'priority'. Once completed, the Decision Support Tool should provide an overall picture of your needs, and allow the multidisciplinary team to consider what care is required to meet your needs in full. The multidisciplinary team should also weigh up the overall risk to you from your condition or the risk to others. [5] gov.uk/government/uploads/system/uploads/attachment_d ata/file/213139/decision-support-tool-for-nhs-continuing- Healthcare.pdf Guide 27: Continuing Healthcare - should the NHS be paying for your care? 14

15 5 So who qualifies? You are seen as having a 'primary health need' and being eligible for NHS continuing healthcare if you have a 'priority' level need, or if you have any of the following: - two 'severe' needs across all care domains - one domain recorded as severe, together with needs in a number of other domains - a number of domains with high and/or moderate needs. Making the decision about a primary health need Deciding whether someone has a primary health need can be complicated. If your needs do not fit easily into the 12 'care domains' used as part of the Decision Support Tool, the multidisciplinary team should still work out and record the extent and type of your need, and take it into account (and record it in the 12th care domain see chapter 4) when making their decision. If there is a disagreement between the multidisciplinary team about the domain level (whether your needs are low, moderate, or high, for example), the Framework advises that the higher level of a domain should be selected, with a reason for this. The final decision about whether you are eligible will be made using evidence from the completed Tool as well as the professionals clinical judgement. Once the multidisciplinary team have agreed, they should make a recommendation about your eligibility for NHS Continuing Healthcare to your CCG. Only in exceptional circumstances Guide 27: Continuing Healthcare - should the NHS be paying for your care? 15

16 and for clearly stated reasons, should the CCG not follow the multidisciplinary team s recommendation, for example: - if there is lack of evidence to support a recommendation - if a comprehensive assessment of your needs has not been carried - if the Decision Support Tool is not fully completed. Good to know Financial reasons should not be part of the CCG s decision not to follow the recommendation. Also, the recommendation should not be determined by where the care is to be provided, or who delivers the care. How soon will a decision be made? A decision on whether or not you are eligible for NHS Continuing Healthcare should be made within: - 14 days of a request of a Checklist or - if you need to have a full assessment, within 28 days of the Checklist being received by the mutlidisciplinary team, or within 28 days of them being notfified of the need for an assessment. If the Fast Track Tool has been completed, an assessment should be carried out immediately and care should be provided within 48 hours. See chapter 7 about when the Fast Track Tool may be used. The final decision should be given to you and your carer as soon as possible, preferably in writing with: - clear and concise reasons for the decision - details of who to contact if you want more information - a copy of the completed Decision Support Tool Guide 27: Continuing Healthcare - should the NHS be paying for your care? 16

17 - information on how to ask for a review or appeal if the decision is that you do not qualify - time scales for review - details of the care to be provided if you are eligible. If you do not qualify Even if you do not qualify for NHS Continuing Healthcare, the CCG and the council should always consider whether the assessment has identified needs that require immediate action. If it has, they should arrange appropriate services for you. See chapter ten about what you can do if you do not agree with the decision that has been made. Guide 27: Continuing Healthcare - should the NHS be paying for your care? 17

18 6 What if I have mental health needs rather than physical health needs? Eligibility for NHS Continuing Healthcare is not based on having a specific medical condition, such as stroke or dementia. Eligibility is based on how your needs (as a result of your condition) impact on you, and the type and level of care that you need as a result. For example, Mrs B has been diagnosed with dementia and has difficulty remembering her children s names, but she can carry out some of her own personal care. She also requires prompting to take her medication. Mrs B is unlikely to meet the eligibility criteria. In contrast, Mrs C also has been diagnosed with dementia, is physically mobile but often displays aggressive behaviour. She is also doubly incontinent, has leg ulcers, communication difficulties and is unable to carry out personal care tasks herself. It may be that Mrs C s condition means that she needs intensive supervision to prevent her from being harmed or harming others. It may also mean that her memory impairment, pain management difficulties, plus the mixture of other significant needs, increases the type and level of care needed to manage risks (for example, risk of self-harm, aggression, isolation, falls etc) for Mrs C. Good to know A Health Service Ombudsman report made it clear that continuing healthcare is not just for patients with physical healthcare needs. but also for those with mental healthcare needs (including those relating to dementia), if the level of Guide 27: Continuing Healthcare - should the NHS be paying for your care? 18

19 needs meet the national criteria (see chapter 2). The same NHS Continuing Healthcare criteria and assessment should be completed to assess the needs of someone with dementia. This assessment should, where relevant, include the opinion of a psychiatrist or other mental health professional. The Alzheimer's Society ( , NHSCC@alzheimers.org.uk) has set up a support group for people who believe that they have wrongly been denied access to NHS Continuing Healthcare funding to help them challenge decisions. Members of the support group are volunteers who have themselves successfully obtained funding. They offer practical support and information based on their own experience. Guide 27: Continuing Healthcare - should the NHS be paying for your care? 19

20 7 End-of-life care If you have a primary health need because of a rapidly deteriorating terminal condition which may be entering its final stages, an appropriate professional can fast-track you for immediate NHS Continuing Healthcare, using the Fast Track Pathway Tool [6]. This bypasses the Checklist and Decision Support Tool described earlier, and ensures that you can receive care in your preferred location as quickly as possible. The Fast Track Pathway Tool may be used by registered nurses, consultants or a GP responsible for your diagnosis, treatment or care. The responsible professional should have the required skills and knowledge about your needs to be able to make a clear recommendation about whether your condition may be becoming terminal. If a recommendation is made for NHS Continuing Healthcare, this should be accepted by your CCG. [6] gov.uk/government/uploads/system/uploads/attachment_d ata/file/213140/nhs-chc-fast-track-pathway-tool.pdf Guide 27: Continuing Healthcare - should the NHS be paying for your care? 20

21 8 Can I choose where my care is provided? If you meet the criteria for NHS continuing healthcare, your CCG should provide the care that is most appropriate to meet the needs identified in your assesment. Your CCG should also take your preferences, wishes and expectations into account - including your quality of life and family environment. They should discuss with you the benefits and risks associated with being treated in each type of location (such as a hospital, a care home, or in your own home), before coming to a decision about where the care will be provided. Despite this, the location usually depends on what resources are available in your local area to meet your needs. Generally, CCGs can take the cost of providing the care in a particular place into account, such as the cost of providing your care in a care home, compared to the cost of providing it in your own home. However, they should balance this with the reasons why you wish to remain in a particular place. For example, you may prefer to stay in your own home so that you can continue to live with your family. An example In one legal case (which is referred to in the National Framework), a severely disabled woman who qualified for NHS continuing healthcare expressed her desire to continue living at home with her parents, but the local NHS wanted her to move into a care home. The Court found that Article 8 of the European Convention of Human Rights had been breached, as removing her from her home interfered with her family life and such a move could not be justified. Guide 27: Continuing Healthcare - should the NHS be paying for your care? 21

22 Improvement in the woman s condition, the quality of life in her family environment, plus her wish to remain at home with her family held greater weight than the cost. When you may have more choice If you have a deteriorating condition, or if you are terminally ill, it is very likely that you will have greater choice about where you wish to spend your last days. This is because, the decision about your care should be made using the principles of the End of Life Strategy [7] which seeks to improve end of life care for adults. When your choice cannot be accomodated If you prefer to move to a particular care home, but that home is concerned that they cannot meet your needs, for example, if they are not registered to provide nursing care, you may need to discuss other options with your CCG co-ordinator dealing with your case. If you are unhappy with the location of your care, you or your carer can contact or write to the local CCG Continuing Healthcare Co-ordinator, and ask for a meeting to explain your reasons for objecting. [7] gov.uk/government/publications/end-of-life-care-strategypromoting-high-quality-care-for-adults-at-the-end-of-theirlife Guide 27: Continuing Healthcare - should the NHS be paying for your care? 22

23 9 How long does NHS Continuing Healthcare last? Although NHS Continuing Healthcare is awarded for people with long- term care needs, it does not last indefinitely. It can stop when your needs change - for example, if your condition improves. Regular reviews are carried out to make sure that the care provided continues to meet your needs. For example, a review of your needs should be carried out: - after three months of you first receiving this funding - on a yearly basis thereafter. A joint review between the council and your CCG should take place. If it is agreed that you are no longer eligible, alternative funding arrangements must be agreed and put into place before NHS Continuing Healthcare funding is stopped. Once a decision has been made, you and your carer should be notified about any changes, and about your rights to ask for a review. Guide 27: Continuing Healthcare - should the NHS be paying for your care? 23

24 10 What if it is decided that I am not eligible for NHS Continuing Healthcare? The Department of Health guidance [8] explains the steps that you can take to challenge the decision if it is decided that you are not eligible. These are: Step one: looking at your assesment again If you want to challenge a decision for NHS Continuing Healthcare, you should get a copy of the completed Tools (normally the Checklist and Decision Support Tool) and ask your CCG to look at it again. You should also provide them with any additional information which might help your case. Step two: appeal If you are still unhappy with the decision, you can ask for a review by writing to your CCG, stating clearly that you feel that you have a primary health need that fits the criteria. You must do this within six months from the date that the decision was made. The CCG will then have three months to carry out a review. You can find the contact details for your CCG by calling NHS England ( ), or by using the NHS Choices website: nhs.uk/service-search/clinical-commissioning- Group/LocationSearch/1) Step three: independent review If you are still unhappy after the CCG have carried out their review, you can ask NHS England to carry out an independent review of the decision ( , Guide 27: Continuing Healthcare - should the NHS be paying for your care? 24

25 england.nhs.uk). You have six months to apply for an independent review after you have heard back from the CCG. If using the local review process (step one) would cause undue delay, NHS England may agree for your case to proceed direct to an independent review, without having to go through the local review process. What happens at the independent review? There we will be a panel meeting to discuss your case. You can ask to attend the panel meeting in person or submit your views in writing. If you decide to attend, you can ask to bring a representative or advocate (who is not acting in a legal capacity) with you for support or to speak on your behalf, if you would prefer this. The independent review process is solely focused on looking at your needs against the criteria. It is not a place for legal arguments, although your legal representative may be able to ask questions after the meeting. The panel members will need to satisfy themselves that the views of any person acting on your behalf accurately represent your own views, and do not conflict with your wishes or best interests. It may be a good idea to seek advice on how to ensure your argument for NHS Continuing Healthcare is best made to the panel. The Independent Review Panel will look at: - the procedure followed by NHS England or your CCG in reaching its decision as to your eligibility for NHS Continuing Healthcare Guide 27: Continuing Healthcare - should the NHS be paying for your care? 25

26 or: - the decision regarding eligibility for NHS Continuing Healthcare The panel will not look at issues which should be resolved by speaking to the CCG co-ordinator, or by using the NHS complaints procedure, including: - the content of the eligibility criteria - the type and location of services offered - the content of any alternative care package offered - the quality of treatment provided. If the panel agrees to look at your case The panel may recommend that your case is reconsidered by the CCG, addressing any problems with how the process was carried out, or how the criteria were applied. Alternatively, the panel may recommend that on the evidence submitted, you should be considered eligible for NHS Continuing Healthcare. The decisions of an IRP should be accepted by NHS England in all but exceptional circumstances. NHS England should let you and the CCG know the outcome of the review. If the panel does not agree with you The panel may recommend that on the evidence submitted, you should not be considered eligible for NHS Continuing Healthcare. What happens next? A full record of the panel hearing should be kept and you, and any other people involved, should receive a copy of the Guide 27: Continuing Healthcare - should the NHS be paying for your care? 26

27 recommendations. If NHS England or the CCG decide, in exceptional circumstances, not to accept the independent review panel's recommendation, it should explain this in writing to you and the chair of the panel, giving reasons why they are not accepting the decision. In such circumstances, you have the right to pursue the matter through the NHS complaints procedure or through the Ombudsman (see below) and you should be informed in writing by NHS England or the CCG of this right. See our guide to complaints about care and health services (Guide 18) for more information about the NHS Complaints procedure. Step four: Parliamentary and Health Service Ombudsman If you are not satisfied with the final outcome from the independent review, you or your representative has a right to complain to the Parliamentary and Health Service Ombudsman (PHSO) within 12 months of the decision being made by the NHS England independent review ( , ombudsman.org.uk). The Ombudsman is responsible for investigating complaints and unfair decisions made by NHS bodies. Ideally, your case should already have been investigated locally by the CCG and independently by NHS England before you contact the Ombudsman, but in special circumstances you may be allowed to take your case directly to the Ombudsman. If you feel the Ombudsman has not fully considered your complaint or they have done something incorrectly, you can also make a formal complaint about the Ombudsman itself. Guide 27: Continuing Healthcare - should the NHS be paying for your care? 27

28 For more information, see ombudsman.org.uk/make-a-complaint/unhappy-with-ourservice The Ombudsman s decisions can be subject to judicial review procedures, but you must make an application, usually within three months, for legal advice and representation if you are not satisfied with the Ombudsman decision not to award NHS Continuing Healthcare. To do... Remember to keep copies of any correspondence you send or receive at each stage because you may need to refer back to these at a later date. Support to challenge the decision Contact the Independent Complaints Advocacy Service ( , nhscomplaintsadvocacy.org) if you need support with going through this review process. If you are in hospital If you are in hospital and an assessment is carried out but you do not meet the criteria, you can ask the professionals involved for a review of the decision. This should take place within 14 days. During this period, the NHS is responsible for your care. However, if following a local review, the decision is that you are not eligible for Continuing Healthcare, a referral should be made to social services for an assessment for community care services and to assist with discharging you. You still have a right to continue your appeal against the decision through NHS England. Guide 27: Continuing Healthcare - should the NHS be paying for your care? 28

29 [8] gov.uk/government/publications/guidance-on-the-timelimits-applicable-from-april-2012-for-requests-on-reviewof-eligibility-decisions-for-nhs-continuing-healthcarefunding Guide 27: Continuing Healthcare - should the NHS be paying for your care? 29

30 11 Refunds You may be entitled to a refund from the local council, or an ex-gratia payment from the CCG, to cover any costs you may have incurred as a result of a delayed or disputed decision on eligibility for NHS Continuing Healthcare. Refunds for unreasonable delay If the CCG decides that you are eligible for NHS Continuing Healthcare and takes unjustifiably longer than 28 days to reach this decision, your CCG should refund the local council the costs of any care services provided from day 29 until the date the decision was made. If you have made financial contributions to the local council, these payments should be refunded to you by the council. If you paid for your care in full you should receive an ex-gratia payment direct from the CCG. The refund should be made unless your CCG can demonstrate that the delay is reasonable as it was due to circumstances beyond their control. This could include a delay in getting access to copies of assessments or care records from a third party, or a delay in setting up a multidisciplinary team. However, CCG s should make all reasonable efforts to ensure that the required information and decision is made available within 28 days. Refunds after a review If after the CCG decided that you were not eligible for NHS Continuing Healthcare, the CCG revised its decision following a review, the CCG should refund any costs incurred to the local council. If you made financial Guide 27: Continuing Healthcare - should the NHS be paying for your care? 30

31 contributions to the local council, the local council should reimburse you in full. If you had paid for your care in full you should receive an ex-gratia payment direct from your CCG. Ex-gratia payments If you arranged and paid for care services privately while you were disputing a decision on eligibility for NHS Continuing Healthcare, which was then revised by the CCG or while there was a delay in the decision making process, you may be eligible for an ex-gratia payment. The CCG should consider making an ex-gratia payment to you in order to restore your finances to the position they would have been, had matters been carried out correctly. This is to remedy any injustice or hardship suffered as a result of the incorrect decision. If you feel that the amount of money is not enough to cover the costs you incurred, you can challenge it through the NHS complaints process. Guide 27: Continuing Healthcare - should the NHS be paying for your care? 31

32 12 Making a retrospective application for NHS Continuing Healthcare funding It may be that having read this information, you feel a decision made in the past about NHS Continuing Healthcare funding was incorrect. If this is the case, there are a number of steps you may wish to consider before applying for a refund or review of the decision, (subject to the deadline dates below): - Read the relevant criteria used at the time to see if you had, or may have needs that fit the criteria and as a result may have been wrongly charged for your care - Write to or telephone the CCG (normally the one responsible for your GP) where you were being cared for at that time to ask for a retrospective review. If you decide to call, it is important to follow this up with a written request - You should have your letter acknowledged by the responsible CCG and receive a consent form to sign and return - Once the necessary forms have been returned, the NHS Continuing Healthcare team can consider whether to progress your case - If the CCG takes on your case, the NHS Continuing Healthcare team is responsible for collating information about your health and social care needs from various sources. This might include records from hospital admissions, records from any care homes you stayed at, any records held by social services, district nurses or GP - You should be informed in writing of the outcome. You should receive information about how to appeal; time scales for retrospective reviews and how to make a complaint if you are not happy with the decision. Guide 27: Continuing Healthcare - should the NHS be paying for your care? 32

33 13 What is an NHS nursing care payment? You should be considered for NHS Continuing Healthcare before a decision is reached about the need for NHS-funded nursing care. If you do not qualify for full funding, you may be eligible for a NHS-funded nursing care payment of a week instead. The payment will help towards the nursing care part of your care home fees. It does not cover the accommodation, board or personal care costs of your care home fees. The NHS nursing care payment is only paid if you are assessed as needing care in a nursing home. The assessment will be carried out by a registered NHS nurse who will take into account all of your nursing needs. The payment is normally paid by the NHS to the nursing home. If you are paying for your own care, this payment will reduce the overall care home fee. If you are receiving funding from your local council towards your care home fees, this payment will reduce the local council s contribution towards your care home fees. For more information about NHS nursing care payments, see our guide: Care home fees: paying them in England (Guide 16). Guide 27: Continuing Healthcare - should the NHS be paying for your care? 33

34 14 Personal Health Budgets Person Health Budgets (PHB) are aimed at helping people have greater choice, flexibility and control over their care and money to meet their assessed needs. At the moment, you do not have an automatic right to a PHB. This is given at the CCG s discretion. A PHB could include: - a notional budget held by the CCG - a budget managed on your behalf by a third party - a cash payment to you, known as a direct payment. You will be able to request a PHB from April NHS Continuing Healthcare patients and people with long-term conditions are expected to be the first to benefit. In the meantime, CCGs are encouraged to consider providing a notional budget held by your CCG. More information about PHBs is available from personalhealthbudgets.dh.gov.uk. If you are already in receipt of a direct payment from social services, prior to becoming eligible for NHS Continuing Healthcare, you have a right to ask for a PHB, or for the direct payment to continue, if withdrawal of the direct payment will have a detrimental effect on your care. Guide 27: Continuing Healthcare - should the NHS be paying for your care? 34

35 15 Can I pay more to choose a care home of my choice? NHS services are free, so patients should never be charged for, or asked to pay a top-up fee to receive NHS care. If you voluntarily request to pay for additional health services, this should be discussed first with your CCG. Your CCG will need to know why you wish to do this, ensuring that the existing package under NHS Continuing Healthcare is both sufficient and appropriate to meet your assessed needs, taking into account your personal care needs (proximity to family and friends). This will include reviewing your care to identify if there are any other NHS services that can be provided to meet your needs. Where your CCG agrees that you can pay for additional services privately, there must be a clear separation between the care and funding provided by the NHS, to that purchased privately. For example, it may be that you have been assessed as needing two physiotherapy sessions per week under NHS continuing healthcare, but you want to purchase additional physiotherapy sessions. Your CCG should review your care to see if they should be providing more sessions. If they decide they should not be, you can make private arrangements to employ, pay and have care delivered for these extra sessions separately. Financial arrangements for the privately funded care are entirely a matter between you and the relevant provider. If you intend to do this, discuss with your CCG how the additional private care will be managed and how consistency of care will be maintained in meeting your Guide 27: Continuing Healthcare - should the NHS be paying for your care? 35

36 needs, for example, by ensuring that both physiotherapist (private and NHS) use the same techniques. In many cases, it may not be possible to make distinct or separate arrangements for your care, especially if you want to pay a top up to stay in a care home of your choice that costs more. This is because your CCG sets up the contract to pay in full for your accommodation and personal care. If you wish to pay for a more expensive room, for example, because it is larger or has en-suite facilities, you should first check with your CCG as it has the final say as to whether it will allow you, or someone else, to top up. You should also ensure that whoever agrees to pay the top up is in a stable financial position to continue to pay as long as needed - otherwise you may have to move to a cheaper room/care home. If you are unhappy about the decision, you have a right to make a complaint to the NHS (see chapter 10). Guide 27: Continuing Healthcare - should the NHS be paying for your care? 36

37 Can I be asked to move if I am already in a care home that costs more than the Clinical Commissioning Group is willing to pay? If you are already in a higher priced care home before becoming eligible for NHS Continuing Healthcare, either because you were paying for your own care, or a third party paid a top-up for your care when you were funded by the local council, your CCG can ask you to move to a cheaper care home. However, before doing so, your CCG should consider if they should pay more for your care, as well as the risks involved in any change of care or location. For example, if your care home is the only care home where you can maintain regular contact with family members, or a move to another care home could involve a significant risk to your health and well being, the CCG should pay more. If your CCG does not agree that there are reasons to justify them paying more, this should be put in writing to you. You have a right to dispute this by making a formal complaint using the NHS complaints procedures. You also have a right to help from an independent advocate. Guide 27: Continuing Healthcare - should the NHS be paying for your care? 37

38 16 Effect on benefit entitlement Living at home If you receive NHS Continuing Healthcare in your home, your benefits should not be affected. However, if you receive payments from the Independent Living Fund, these will usually stop after seven days. This is because you have to receive social services funding to be entitled to payments from the Independent Living Fund. If you receive Supporting People funding, you may not be affected as it is not funded by social services. The Supporting People commissioning body dealing with your case can advise you about their local eligibility criteria. Living in a care home or in a hospital If you are living in a care home or hospital, your state pension is not affected. If you receive Bereavement Allowance or Industrial Injuries Disablement Benefit, these will continue and will not be affected. The amount of Pension Credit you receive is not affected as long as it does not contain a severe disability premium. However, you will lose your entitlement to Disability Living Allowance (DLA), Personal Independence Payment (PIP) - which will eventually replace DLA - or Attendance Allowance (AA) after 28 days. If someone is receiving Carers Allowance for supporting you, this will also stop when your DLA, PIP or AA stops. For further advice about the effect of NHS Continuing Healthcare on your benefit entitlement, contact your local Citizens Advice Bureau ( , Guide 27: Continuing Healthcare - should the NHS be paying for your care? 38

39 citizensadvice.org.uk), Age UK ( , ageuk.org) or your local Age Concern branch. Guide 27: Continuing Healthcare - should the NHS be paying for your care? 39

40 17 Caring for someone who receives NHS Continuing Healthcare If you are caring for a person at home who receives NHS Continuing Healthcare, you are still entitled to an assessment of your needs as a carer from social services. This is known as a carer s assessment. It could result in you being provided with support services, such as manual handling training or respite care, to enable you to have a life outside of your caring role. Depending on the support services available in your local area, some of the needs which are identified in your carer s assessment but provided for the cared-for person, such as a respite break in a nursing home or a sit-in service, may be paid for by the NHS. There may also be other needs that social services can help with; for example, support with independent living expenses and specialised equipment and adaptations. This support provided could include providing respite breaks to carers in the cared for person s home, rather than arranging for them to go into a hospital to provide the carer a break. This fact may be particularly important for those patients who have dementia and might not understand why they have been moved from their home. For more information on support for carers you may want to contact Carers UK ( , carersuk.org), a national carers support organisation. You may also want to see our guide, Carers: What Support is Available? (Guide 10). Guide 27: Continuing Healthcare - should the NHS be paying for your care? 40

41 18 Making your case - Write down your full medical history - Write a clear account of your needs over a 24/48 hour period. This should include the type and level of care needed and how your needs are managed. You should also include how your needs fluctuate, as well as, any risks (falls, self harm/neglect, aggression etc) in managing your care - Record all the dates, times, contact names and details of conversations every time you speak to the NHS or social services about your assessment - Gather all your documentation, for example, old/recent assessments, health records (you may have to request copies of these from your GP, hospital or CCG), eligibility criteria for NHS Continuing Healthcare, the Checklist, the Decision Support Tool and/or the Fast Track Pathway Tool - Identify if all your medical and social care needs have been accurately recorded on the Tool, and highlight any needs that may have been missed out - Provide specific examples from the notes and Tools to show why and how you meet the criteria - Try to attend all meetings in person if you can - Find as many people who can support your case, for example, social worker, GP, MP, advocate, solicitor (if necessary) etc - If you think you have a good case, you may need to be persistent and patient: many people are successful at getting decisions changed, but it can take time - You also need to be realistic if it is clear from the evidence that you do not have a good case. Guide 27: Continuing Healthcare - should the NHS be paying for your care? 41

42 This guide is not a full explanation of the law and is aimed at people aged over 60. If you need any of this information in another format (such as large-print or Braille), please contact our Information Manager on or comms@independentage.org If you have found our advice useful, please consider supporting us by raising money, volunteering or making a donation. We receive no state funding and rely on support from individuals, trusts and other sources to continue providing our services to hundreds of thousands of people in need. For further information on how to support us, please see our website independentage.org or call Independent Age Independent Age 6 Avonmore Road London W14 8RL View our page on Facebook T E charity@independentage.org Advice line Follow us on Independent Age is the operating name of the Royal United Kingdom Beneficent Association Registered charity number

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