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Practical support

Continuing care

NHS continuing healthcare is free care outside of hospital that is arranged and funded by the NHS. It is only available for people who need ongoing healthcare and meet the eligibility criteria described below. NHS continuing healthcare is sometimes called fully funded NHS care.

Where is care provided?

NHS continuing healthcare can be provided in any setting, including a care home, hospice or the home of the person you look after. If someone in a care home gets NHS continuing healthcare, it will cover their care home fees, including the cost of accommodation, personal care and healthcare costs.

If NHS continuing healthcare is provided in the home of the person you look after, it will cover personal care and healthcare costs. It may also include support for carers – see NHS Continuing healthcare FAQs for more details.

Eligibility

To be eligible for NHS continuing healthcare, the person you look after must be assessed as having a "primary health need" and have a complex medical condition and substantial and ongoing care needs.

Not everyone with a disability or long-term condition will be eligible. The assessment process is outlined below.

Guidance says that the assessment for NHS continuing healthcare should be "person centred". This means that the person being assessed should be fully involved in the assessment process. They should be kept informed, and have their views about their own needs and support taken into account. As a carer, you should also be consulted where appropriate. It’s a good idea to make it clear that you would like to participate fully in the assessment process.

A decision about eligibility should usually be made within 28 days of an assessment being carried out.

If they are ineligible

If the person you care for doesn’t qualify for NHS continuing healthcare, their local authority will be responsible for assessing their care needs and providing services if they are eligible.

However, if they don’t qualify for NHS continuing healthcare but are assessed as having healthcare or nursing needs, they may still receive some care from the NHS. For someone who lives in their own home, this could be provided as part of a joint package of care, where some services come from the NHS and some from social services. If the person you care for moves into a nursing home, the NHS may contribute towards their nursing care costs (see NHS-funded nursing care, below).

Care services from the local authority are usually means-tested, so if the person you look after is eligible for local authority care, their finances will be assessed. Depending on their income and savings, they may need to pay towards their care costs.

Click on the bars below for more information on NHS continuing healthcare assessments and eligibility, disputes, refunds and NHS-funded nursing care.

NHS Continuing Care assessments

Primary care trusts (who manage local health services) must carry out an assessment for NHS continuing healthcare if it seems that someone may need it. For example, the assessment should be carried out:

  • if someone’s physical or mental health worsens significantly
  • before someone is awarded NHS-funded nursing care
  • when someone is discharged from hospital. This should happen before the person is assessed for help from their local authority.

You can also ask for an assessment for the person you look after by talking to a health or social care professional working with them or the NHS continuing healthcare coordinator at the primary care trust. You can find out the name of your local co-ordinator by asking your GP, contacting your local Patient Advice and Liaison Service (PALS), or contacting your Clinical Commissioning Group directly.

For most people, there’s an initial checklist assessment, which is used to decide if they need a full assessment. However, if someone needs care urgently, for example if they are terminally ill, they should be assessed under the "fast track pathway" (see below).

Initial assessment

The initial assessment consists of a checklist, which can be completed by a nurse, doctor, other healthcare professional or social worker. The person you look after should be told what’s happening, and be asked for their consent.

Depending on the outcome of the checklist, the person you care for will either be told that they’re not eligible for NHS continuing healthcare, or be referred for a full assessment. It’s important to remember that being referred for a full assessment doesn’t necessarily mean that someone will be found eligible for NHS continuing care.

Whatever is decided, the professional completing the checklist should record written reasons for their decision, and sign and date the checklist. The person you care for should be given a copy of the completed checklist. You can download a blank copy of the NHS continuing care checklist from GOV.UK.

See disputes, below, for details of what to do if you don’t agree with a decision about eligibility for NHS continuing healthcare.

Full assessment

When someone has a full assessment for NHS continuing healthcare, a multi-disciplinary team will assess their care needs. This team is made up of health and social care professionals who are already involved in their care. You should be told who is co-ordinating the assessment.

The multi-disciplinary team will use a "decision support tool" to decide whether the person you look after is eligible for NHS continuing care. The assessment looks at the following areas:

  • behaviour
  • cognition (understanding)
  • communication
  • psychological/emotional needs
  • mobility
  • nutrition (food and drink)
  • continence
  • skin (including wounds and ulcers)
  • breathing
  • symptom control through drug therapies and medication
  • altered states of consciousness

Those carrying out the assessment should look at what help is needed, how complex these needs are, how intense and unpredictable these needs can be, as well as any risks that would exist if adequate care was not provided. For each of these issues a decision is then made about the level of need. The levels are marked "priority", "severe", "high", "moderate" or "low".

If the person you look after has at least one priority need, or severe needs in at least two areas, they should be able to get NHS continuing healthcare. Someone can also qualify if they have a severe need in one area plus a number of other needs, or a number of high or moderate needs. In these cases, the overall need, and interactions between needs, will be taken into account, together with evidence from risk assessments, in deciding whether NHS continuing healthcare should be provided.

The assessment should take your views and the views of the person you look after into account. As with the checklist, you should be given a copy of the completed decision support tool document. You should also be given clear reasons for the decision.

You can download a blank copy of the continuing care decision support tool document from GOV.UK.

Fast-track assessment

If someone’s condition is deteriorating quickly and they are nearing the end of their life, they should be assessed under the NHS continuing care fast track pathway so that an appropriate care package can be put in place as soon as possible.

Government guidance says that care should be put in place within 48 hours of someone being found eligible under the fast track pathway.

Care planning

If the person you care for is found to be eligible for NHS continuing healthcare, the next stage is to arrange a care package which meets their assessed needs.

Depending on the person’s situation, there may be different options that could be suitable, for example, being cared for in a care home, or support in their own home. If it’s decided that someone needs care in a care home, there could be more than one local care home that meets their assessed needs.

Your PCT should use the views of the person you look after as a starting point when agreeing their care package and the setting where it will be provided, but they can also take other factors such as the cost and value for money of different options into account. For more details about individual choice and NHS continuing care packages, see NHS Continuing care FAQs.

Reviews

If the person you look after is awarded NHS continuing healthcare, their case will be reviewed after three months. Their care needs will be reassessed and their eligibility will be looked at again. The review also looks at whether someone’s existing care package meets their assessed needs.

Following this, reviews should be carried out at least once a year.

If the outcome of someone’s review means that their care package will change, they should be told in writing. If they don’t agree with it, they will need to use the NHS complaints procedure.

Disputes

You and the person you look after may need to know how to complain or take further action if:

  • you don’t agree with a decision about eligibility, or you’re not happy with the way the assessment was carried out
  • you’re not happy with an NHS continuing healthcare package

Contact the Patient Advice and Liaison Service (PALS) at your CCG, which should be able to put you in touch with them.

Disputes about eligibility

Disputes about eligibility for NHS continuing healthcare are dealt with differently depending on whether the person you care for has only had an initial "checklist" assessment, or if they have had a full assessment.

Initial assessment

If the person you care for has had an initial checklist assessment and then been refused a full assessment, they can ask the PCT to reconsider its decision and carry out a full assessment. If you include extra information as part of your request, the PCT should take this into account.

The PCT should give you a written reply as soon as possible. If you’re still not satisfied, you will need to use the NHS complaints procedure.

Full assessment

If the person you look after has had a full assessment for NHS continuing healthcare, and they’re not happy with the decision or the way the decision was made, the first stage is to use the local dispute resolution procedure. The PCT should tell you how to do this.

If the issue can’t be resolved locally, or if using the local dispute resolution procedure would cause unreasonable delays, you can ask the PCT for a review. The PCT should continue trying to resolve the issue informally, and may arrange for your case to be reviewed locally first, perhaps by another PCT. If so, they should give you information about their local review procedures, including timescales.

If the issue isn’t resolved by local review, or if a local review would cause unreasonable delays, the next step is an independent review. This means that an independent panel will consider the case and decide whether the PCT has acted correctly.

You and the person you care for should be given an opportunity to contribute to the review, and to see all the evidence that is taken into account. You may find it useful to get support from your own medical practitioners or from disability organisations that have particular expertise in the health problems of the person you care for. At this stage, you should be offered the support of an advocate if you need one to help you through the process.

If you’re still not satisfied by the outcome of an independent review, you can ask for your case to be looked at by the Parliamentary and Health Service Ombudsman.

Disputes about a care package

If the person you care for has been awarded NHS continuing healthcare, but isn’t happy with the care that’s being provided, or the setting, they will need to use the NHS complaints procedure. See NHS continuing care FAQs for more information relating to individual choice about care packages.

Refunds

PCTs should make a decision about eligibility for NHS continuing healthcare within 28 days of getting a completed checklist or request for a full assessment, unless there are circumstances beyond the PCT’s control.

If the PCT decides that the person you care for is eligible, but takes longer than 28 days to decide this, and the delay is unjustifiable, they should refund any care costs from the 29th day until the date of their decision.

Revised decisions

If someone’s PCT decided that they weren’t eligible for NHS continuing healthcare, but then revised this decision after a dispute, the PCT should refund their care costs for the period between their original decision and their revised decision.

How refunds are paid

If the person you look after was getting care services from their local authority during the period of time that the refund covers, the PCT should reimburse the local authority. If the person you look after was being charged by their local authority for these services, their local authority should reimburse them.

If the person you look after was paying for care directly during this period, their PCT should give them a payment to restore their finances to the level they would have been if they hadn’t had to pay for the care.

NHS funded nursing care

If someone isn’t eligible for NHS continuing healthcare, but they are in a nursing home (a care home that is registered to provide nursing care) they may be eligible for NHS-funded nursing care. This means that the NHS will pay a contribution towards their nursing home fees.

NHS-funded nursing care is only used to pay for the costs of nursing care. People who get it will still need to pay for their accommodation, board and personal care, or have a community care assessment to see if they can get help with these fees from their local authority.

The assessment for NHS-funded nursing care should be done automatically when someone moves into a nursing home. Eligibility depends on whether the person is assessed as having needs that require a nursing care environment.

NHS-funded nursing care is currently £108.70 per week in England.

Before September 2007 there was a three-tiered system for nursing care. Anyone who was on the highest band of NHS-funded nursing care can continue to get this until their circumstances change. This is paid at £149.60 per week.

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Comments

The 20 comments posted are personal views. Any information they give has not been checked and may not be accurate.

mantaman said on 27 June 2014

Situation here is my 94 year old (dementia diagnosed) mother had a stroke that has left her with serve cognitive impairment along with behavioural problems(aggression). Currently held on hospital ward under a deprivation of Liberties order & medication to calm her.
Social services & hospital multi disciplinary team all agree she requires conitnuing health care.
Local CCG have faffed around delaying things for 3 weeks, but will NOT give a decision on funding for nursing home care..

CCG?
just another QUANGO with a new name...

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spengler said on 13 May 2014

I am trying to complete a questionnaire as part of a retrospective assessment for Continuing Care. My mother has very advanced dementia which has progressed and manifested itself in a variety of ways over the last 8 years with varied and extensive caring requirements. I am trying (and failing) to find guidance on the site as to what constitutes a "primary health need" so that I can answer a question that asks "Why do you consider the individual has a health need and should be cared and funded by the NHS as a opposed to a social / personal care need that would be undertaken and funded by the Local Authority". As far as I can see only an assessment by the NHS, that this questionnaire forms part of, can answer this question. There are indeed subsequent questions on "challenging behaviour", "cognitive behaviour", "nutrition & food" etc. but I am expected to pre-judge this. Why am being asked this?

I have already been through a current assessment for my mother and am now making a retrospective application. I have found the whole process bureaucratic, slow and not publicised. In the final analysis it is designed, I believe, to exclude dementia suffers and their carers from any assistance in caring for what is an undisputed health condition that generates social and personal care needs. The distinction between health and social / personal care needs is false and causes confusion. We should be caring for the whole person with a health condition not artificially creating a divide.

I agree with crosspoint that a joined up approach is long overdue but fear that that politicians don't act because if it was joined up and coherent it would cost too much! They are happy to live the confusion as it reduces the claims.

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crosspoint said on 04 February 2014

I am loathed to recommend another NHS re-organisation but for about 40 years there has been a widening chasm between NHS and local social care services as organised by the Local Authority. Andy Burnham opposition spokesman said ( 3/2/2014 ) wants to join up the services with the NHS taking the lead role for the Care of Older People. I have to say Andy makes a very brave and sensible comment about the Care of OIder People...... You see , Local Authority social care is provided in quite a different way from that of Health services. E.g. Local Authority are about long term sustained services. Where as Health tend to be happier if the their service is short term! In the end of course this is about resources, but if you neglect Older People they will eventually be taken to hospital and finish up on continuing care anyway! So yes we must all support Andy Burnham,s JOINED UP prosed plans. I would prefer to deal with one large Authority than the constant challenges between the Local Authority and the Health Authority. Why cant they work together??

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upsetus said on 11 September 2012

My 94 year old Mother who had a stroke has been assessed as needing a placement with nursing care, but has been deemed not eligible for nhs continuing care. We have found a home that she loves and that myself and other family members like also. The problem is that it is just a care home, not a care home with nursing. The manager of the home has said they have several residents with exactly my Mum's needs and she is confident that she will do well there. But, the discharge team at the hospital has said she can't go there because of the nursing care assessment. Can I override them?

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BHPearl said on 09 June 2012

My aunt was living with my family quite happily until a year ago when she had a stroke. Now she is in a nursing home and requires the same scale of intervention she had in hospital.
Nobody told us about CHC but I found out about it by accident and applied. My aunt's hospital nurse described her as very high risk and very high dependency and she scored 1 severe, 3 high, 3 medium and 3 low needs. However, our PCT requires 5 high to go with the severe before they grant CHC. They do not consider that 3 medium needs plus 3 low needs is the equivalent of 2 high needs, which surely they would if they really looked at her case holistically.. They also manipulate the scores by saying that if you have a loss of cognition you cannot also have a behavioural need or you cannot have needs in ASC if you have high mobility needs. The matron of my aunt's nursing home say they rarely award unless a priority need presents for breathing or behaviour.
My aunt has a severe loss of cognition, cannot communicate, is prone to strokes, cannot use a lavatory at all, even with help, cannot walk, cannot sit in a normal chair, cannot eat normal meals, takes a cocktail of drugs that are administered by an RGN, suffers from halucinations, is at risk from skin from skin lesions because she is diabetic and exhibited behavioural problems in hospital and we still can't get CHC. It's a joke. The ultimate irony is that at ther recent IRP the representative of the PCT said that the local authority agreed that she didn't have a health need. Of course they do because they are only paying £30 a day for her care home. The balance, £50 a day, is paid by my aunt, her sister, NHS Nursing allowance and the charity who runs the home she's in. It's a travesty. Next stop Ombudsman.

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val2 said on 19 August 2011

My mother is 86 and was diagnosed with Alzheimer's in 1997. She has been cared for by my 94 year old father with minimal input. For the last year my mother has been incontinent of faeces, which despite carers going into the home 3 times a day has been completely unmanageable, the house becoming smeared with faeces on the regular basis. Last October she has a very bad fall which required hospitalisation. She had a scan and they found a 'cyst' on her ovary which they ignored and sent her home.

Two months ago my mother developed severe acites and nausea and the GP was called, she did a blood test which she felt confirmed ovarian cancer and had my mother admitted to hospital. After two weeks the hospital still refused to confirm the diagnosis (they lost one sample of fluid and had to repeat the test). It was then confirmed that she had carcinoma with a prognosis of approximately 3 months.

The hospital now want to discharge her home. My mother is completely disorientated but keeps repeating she wants to go home like a mantra. I was told today by the hospital SHO - who started in the job yesterday - that he thinks she has cognition and therefore if she wants to go home she should, besides which they need the bed. He stressed that the 'law' was on his side. No mention has been made of a care package at home. The 'home' is completely unsuitable having narrow stairs which she cannot negotiate, and no downstairs washing facility. If her bed were to be moved downstairs it would be next to the kitchen which given her incontinence (doubly incontinent since admission to hospital) would be a health hazard.

My father is very frail and only just able to care for himself let alone my mother but I was informed that his needs did not concern them.

I feel that for the last 3 months of her life she should have a comfortable caring environment that can meet her needs ie a hospice or nursing home and not just be dumped back into an unsuitable environment.

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rodmarten said on 29 July 2011

My 96 year old father has been resident in a nursing home for the last 5 years following a hip replacement operation. We sold his house in order for him to pay the fees and he gets the allowances that he is entitled to. However, last week he had a stroke, confirmed by the hospital, and is now back in the same nursing home confined to bed. Should the NHS now be responsible for funding his continuing nursing and residential fees?

Rod

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John FB said on 05 March 2011

Hi,

We have both my parents and my wifes Granny with Care needs but no one has offered this support. How do we go about getting the assessments started?

Can anyone help?

Thanks

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WalkerScott said on 23 February 2011

for some reason my comment was deleted.

The best help for all is to read www.nhscare.info

Justice Seeker - if the medicals outweigh the social care requirements then your mother-in-law should receive nhs care.

read the website thoroughly.

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WalkerScott said on 23 February 2011

Quite a few Care Homes who specialise in Dementia and Alzheimer patients do have beds which are allocated to the local NHS Trust. When these are not filled by the NHS they are leased out to help cover the costs.

For all those who have family who are suffering from dementia illnesses please stay focused and try and stay calm. I have been through it all and must say that there are some very caring health care professionals out there as well as others who need a kick start.

The best information can be got from www.nhscare.info
use it or get your children to read it thoroughly. It has not only helped me and my family but quite a few others who have had their care costs ruling overturned and ended up getting their deserved right of continuing care paid for by the NHS. Good Luck to you all.

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justice seeker said on 03 February 2011

My mother-in-law has end stage dementia. She is completely immobile and confined to bed. Her carers have to turn her every 2 hours to prevent pressure sores. She is doubly incontinent. She is unable to communicate. Swallowing creates a choking hazard for her and she has to be fed extremely carefully (having been hospitalised with a lung infection following food getting into her lungs).
Following two NHS assessments she has at least one severe need (cognition). Another possible severe need (mobility) , 2 high needs (nutrition & communication) 4 moderate needs (psychological & emotional needs, continence, drug therapies & symtom control, skin) and 3 low needs (behaviour, breathing, altered states of consciousness). Yet the Continuing Healthcare Team in LIverpool have decided she is not eligible for Continuing Healthcare. So I was interested to read your advice on this website that "If the person you're looking after has priority needs in particular areas, or severe needs in at least two, then NHS continuing healthcare should be provided. Someone can also qualify for NHS continuing care if they have a severe need in one area plus a number of other needs, or a number of high or moderate needs. In these cases the overall need, and interactions between needs, will be taken into account, together with evidence from risk assessments, in deciding whether NHS continuing healthcare should be provided." I have many more issues to raise with Liverpool PCT in the coming months/years as I believe a 'Primary Health Need' is being misinterpreted by local NHS assessors and that they do not appreciate the difference between social care and healthcare. I believe , for whatever reason, the National Framework for Continuing Healthcare and the NHS Continuing Healthcare Practice Guidance are not being referred to when these extremely important decisions are being made. How many have the strength to fight whilst watching their loved ones dying? Justice seeker.

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northbourne said on 18 June 2010

My 93yr old father who has AML which is untreatable and therefor has had to go into a nursing home had been advised to be assessed for NHS Continuing Care We have had two assessments to date once infront of the panel A ratings where changed to B and B ratings changed to CS rendering him not a candidate yet.He has, AML, oesterperosis, diverticular disease cannot walk unaided lost an eye after contracting MRSA in Medway Maritine Hospital and is deaf but still the assessors call his needs low it is an outrage that they are putting us through these assessments already making sure that he doesnt recieve any funding and his life expectancy is low and he needs this funding now we have been advised to appeal the cost of all the paper work Panels and time could have gone into funding people like my dad who has a very servere need i intend to keep on appealing on his behalf.

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jwhiteh2 said on 28 April 2010

The example is stated above

"Alan has been diagnosed with Alzheimer’s disease and it has reached an advanced stage. He lives at home with his son and needs assistance with all personal care tasks such as washing and eating. He has both bowel and urinary incontinence, and needs constant supervision to ensure his safety."

No he wouldn't! - Based upon the way most PCT's interpret the wording of the 12 domains, Alan's condition would not be classed as severe, complex or unpredictable, and he would likely be denied funding. His care needs would be classed as a 'social need', even if he were in a care home or nursing home.

My grandmother has more complex and unpredictable care needs than Alan (above) including severe dementia, bowel and urinary incontinence, no mobility and is unable to reliably communicate - and she has been denied funding, on the basis that her self-neglect, violence and agresssion, and requirement for 24-hour supervision, although 'unpredictable', are not severe enough to warrant funding. The Trust claim that her behaviour, although unpredictable, IS predictable, because it is always unpredictable. (I know it makes no sense)

This is subject to an appeal, and I am quickly discovering that the representatives of the PCT are highly unprofessional, and do not understand even basic words used in the national guidance. My advice to anyone undertaking an asessment is to take a dictionary to explain to these 'professional' assessors the meaning of words like 'reliably', 'weight bearing', 'unable' and 'consistently'. I speak from experience when I say that PCT's will bend the interpretation of facts and, in some cases, even the meaning of plain English, to deny people access to NHS Continuing Care Funding.

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barbskev said on 16 March 2010

Gosh! Am dismayed to hear about the reluctance of homes to accept people accepted for NHS chc. I haven't yet managed to get an assessment for CHC, many professionals have stated that my dad qualifies, but then someone further down the line says his condition is not critical enough. True enough, he is still breathing.

I have him back at home and have to care for him 24/7, doing everything but he is better here, much better. Having said that, he was like a breathing corpse in hospital. No day care will take him, we've tried every avenue, All I want is day respite for myself once in a while and a week's respite every couple of months. I can get the block respite by paying privately but am having to work on getting RNC contributions refunded.
My dad is in an advanced stge of Parkinson's.

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Rob Finch said on 09 November 2009

Angry and frustrated,
We are unable to respond to your quer here. For advice about NHS Continuing Care you should contact the Carers Direct helpline on 0808 802 0202 or email carersdirect@nhschoices.nhs.uk

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angry and frustrated said on 04 November 2009

My mum who is in hospital has been awarded continuing care funding.
I have looked at a huge number of care homes. Many are unsuitable for her needs but those that I thought might be ok have refused to take her. I couldn't understand why. Then yesterday I went to look at another home and all was going well until I mentioned the continuing care funding. The manager of the home cringed and when I asked him why he said that continuing care funding was for a set amount and that that amount was less than the home fees. As he was not allowed to charge a top-up, (he said that would be illegal) it made no business sense for him to take residents being funded by continuing care.
How do I get around that one?
I'm not prepared to let my mum go into some grotty hovel just because it's cheap.

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Rob Finch said on 23 October 2009

We are unable to respond to queries posted here.

If you need advice about NHS Continuing Care or any other aspect you should contact the Carers Direct helpline on 0808 802 0202 of email carersdirect@nhschoices.nhs.uk

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jrg said on 01 July 2009

Hello my relative has had continuing care for some years. she would like to move to another area but is unsure whether her care would continue to be funded if she does move. We cannot find anything written down to find out if once someone is excepted for continuing care whether they can carry that with them to another borough.
Thanks very much.

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MojoJojo said on 11 June 2009

It is possible that the 3 month period just means that your relatives health care needs will be reviewed after 3 months. This is common practice and does not necessarily mean that funding will be withdrawn.

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Nerakp86 said on 05 May 2009

Hello I have a relative whom has been accepted for 3 months continuing Care. But who will pay for his care after this time and if he has been deemed to meet the criteria for Continuing Care surely he should receive that for the near furture? Thank you for your time

Karen

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Page last reviewed: 11/12/2013

Next review due: 11/12/2015

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