What's the difference between a healthcare need and a social care need?
If you’ve ever sat through an assessment for NHS Continuing Healthcare funding on behalf of a relative, you may well have found yourself arguing with assessors about the difference between a healthcare need and a social care need.
No doubt you’ve also been told that your relatives needs are just social care needs, and that they aren’t ‘eligible’ for any funding.
But what exactly is the difference between a healthcare need and a social care need?
Errors in defining care needs – and defining them as either healthcare or social care are the cause of most Continuing Healthcare disputes and appeals.
People in full time care who clearly require at least some degree of nursing care – and even those who require 24-hour nursing care and who therefore have significant nursing needs – seem to be routinely told their needs are merely social care needs.
The reason for this? It means the NHS can relinquish responsibility for providing (and funding) care. The person will instead be means tested and told to pay for their care. And yet, in the UK, healthcare and nursing care are free.
Families understandably find it exasperating and end up being forced into an exhausting appeal process. What’s worse, the appeal process is conducted and overseen by the very NHS people who have denied the funding in the first place – and who hold the purse strings.
What do the NHS Continuing Healthcare guidelines say?
Let’s look at the National Framework for NHS Continuing Healthcare, page 50 paragraph 2.1, 2.2 and 2.3. These guidelines attempt to clarify the difference between and healthcare need and a social care need:
“2.1 Whilst there is not a legal definition of a healthcare need (in the context of NHS continuing healthcare), in general terms it can be said that such a need is 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).
2.2 In general terms (not a legal definition) it can be said that a social care need is one that is focused on providing assistance with activities of daily living, maintaining
independence, social interaction, enabling the individual to play a fuller part in society, protecting them in vulnerable situations, helping them to manage complex relationships and (in some circumstances) accessing a care home or other supported accommodation.
2.3 Social care needs are directly related to the type of welfare services that LAs have a duty or power to provide. These include, but are not limited to: social work services; advice; support; practical assistance in the home; assistance with equipment and home adaptations; visiting and sitting services; provision of meals; facilities for occupational, social, cultural and recreational activities outside the home; assistance to take advantage of educational facilities; and assistance in finding accommodation (e.g. a care home), etc….”
It’s clear that someone who needs full time nursing care does not simply need social care services from a local authority. In addition, it is illegal for a local authority to take on responsibility for providing care to someone who should be receiving care from the NHS.
And yet thousands of people with significant healthcare and nursing care needs are currently paying for every penny of that care – because the NHS has passed responsibility for care to the local authority, which in turn puts the person needing care through means testing.
So if you find yourself in a Continuing Healthcare assessment, and your relative has healthcare and nursing care needs, ask the assessors how exactly they justify saying those needs are social care needs.
The Coughlan case is directly relevant here, too:
Unless nursing care services are “merely incidental or ancillary to the provision of accommodation… and of a nature that an authority whose primary responsibility is to provide social services can be expected to provide” [Coughlan], a person’s care is the responsibility of the NHS – and it should be fully funded by the NHS. Any attempt by a local authority to take responsibility for such care (and certainly if a local authority starts charging top-ups for such care), is likely to be illegal.
In an NHS Continuing Healthcare assessment, make sure all needs are taken into account – regardless of whether they’re health needs or social care needs. In that way you’ll have a full picture of needs.
Keep in mind also that if you’re successful in getting NHS Continuing Healthcare funding, this will cover both health AND social care needs.
Have you come up against this problem in assessments – where health needs are described as social care needs, and for that reason you’re denied Continuing Healthcare funding?
Read more about NHS Continuing Healthcare
How To Get The NHS To Pay For Care – how to stand your ground and argue your case in Continuing Healthcare assessments.
This is happening and thank you for reporting the problem, in this interesting blog.
There are many obvious differences between social care and nursing care but, there are many ‘grey’ areas that need clarifing. I.e
Giving an injection = nursing care
Giving medication (tablets and liquids) = nursing or social care ??????
Feeding a patient who is unable to feed themselves = nursing or social care??
Dealing with a patient who is doubly incontinent = nursing or social care ??
There must be many other ‘grey’ areas as above and it would be very, very useful to have a complete list of specific examples made up, so as to argue in a CHC which is social care and which is nursing care.
Sometimes a better way to think about this – and argue it – is: 1) to remind assessors that it doesn’t matter what the qualifications are of the person delivering the care, i.e. it doesn’t have to be a nurse; and b) to focus on the actual scoring descriptions for each domain in the Checklist or DST – and to show how the person being assessed matches specific descriptions and scores.
Exactly I agree with angela,it does not matter who gives the care.
My father had parkinsons and could not do anything for himself, they are trying
to say he has social needs and not a health need, if he did not have parkinsons. He would be able to do things for himself. I am still fighting them.
it nearly got to IRP but they sent it back to local CCG to do it all over again as there were so many problems with the paperwork, so now waiting for the checklist to be done again. the first one was done dec 2011, it has taken this long and sadly my father passed away nov 2013. So I am still going to fight on for him!!!
I recently had a ward manager shouting at me that nursing care had to be provided by a registered nurse…
I feel like I’m going round in circles trying to find supporting evidence and a definitive example in law to confirm to CHC funding assessors & appeal panel members that my mum has a primary health need. When quoting the Coughlan case I was shot down, being told all the facts of the case are not in the public domain. When I recently contacted a solicitor he seemed to merely look at the scores on the DST. In the recent decline letter from the appeal panel I was told my mum has a primary social need with her health needs being ancillary, although in the same letter the panel acknowledge she needs access to 24hr nursing care. I have now requested an independent review. Any advice would very much be appreciated.
Hello…….the question that was asked is a question no one can answer and the outcome is based on clinical judgment of the social worker and nurse assessor. The scores on the dst cant be used to determine eligibilty as the dst cant decide the outcome. You need to consider the 4 key indicators nature, intensity, complexity and unpredictability. The framework does allow for a joint funded package where the nhs pay up to 50% of the care with social care or self funding picking the rest.
Try and apply the framework to learning disabilities and its a whole different ball game since the st helens ruling !!
Always keep in mind that the Decision Support Tool is exactly that – a ‘support’. It doesn’t define eligibility in itself. This article may help: http://caretobedifferent.co.uk/nhs-continuing-healthcare-assessments-2/
Always remember the local authority legal limit for care, as established in the Coughlan case, which is routinely ignored by NHS assessors. It is still just as valid today as it was in 1999 at the Court of Appeal.
Jane – you’ve raised in interesting point about the solicitor just looking at the scores. Not all solicitors are skilled in this area, and it’s vital to find out what knowledge and experience any given solicitor has in Continuing Healthcare. A good solicitor in this respect can be invaluable. There are also many who know a bit about it, but do not necessarily know enough to add real power to your case.
Any views on contacting the NHS MDT assessor before the formal advice of non-CHC eligibility? We have been verbally advised that my father is no longer eligible but, having read details here (great website thank you!), I feel they have breached/ignored the definition of healthcare need. My father has PSP, gained fast track funding but is now considered to have “just” social care needs….
Am I better to raise this point now in the hope of influencing the final, formal decision or should I wait and go through the appeal process. I’m concerned that, by raising it now, I lose some “ammo” for the appeal.
Wish I had found this site before the actual assessment!
Thanks!
Stuart – I don’t think there’s any harm in setting out in writing your concerns about how the review was handled and sending this to the CHC team now. If it stops you having to go through the appeal process, that would be good. If the decision is ‘no funding’ the CHC team should offer you a ‘local dispute resolution meeting’ where problems can (in theory at least) be ironed out. However, by raising issues now and highlighting flaws in the process followed, you may be able to get the review process repeated, this time properly, and avoid going to appeal. I’ve seen this work before when assessors have realised that mistakes in the process have been identified.
Many thanks Angela. The nursing home manager has (on our behalf) written to the LA Head of Social Services (rather than CHC) forcefully advising procedural and assessment flaws. A welcome development! Sadly, the letter withdrawing funding has already been issued so we’re off down the appeal road. Good to know of the local dispute resolution meeting possibility. Thanks again for your valable insight.
Wishing you well, Stuart.
Our Mother’s GP has offered to write us a letter to help with her assessment. I’m sure I’ve seen a link to a suggested draft letter that can be prepared ready for the GP so that you make sure it gives your case the best support possible. Has anyone else seen this?
I too really appreciate the generous help given on this site and am preparing to join those that are battling for NHS Funding even though my mother has been paying for care since 2008 and has a bill for £80,000.00 from the LA which needs to be paid on the sale of her home.
Last November 21st our GP said my father should get CHC for his care. The GP asked our Social Services for a ‘fast track’ assessment. However, the Social Worker didn’t do the initial assessment until February 13th and the decision it wouldn’t go further was made solely by Social Services. Our GP is not happy with this. I don’t understand why, when the NHS website says the initial assessment can be done by any ‘doctor, nurse, healthcare professional OR Social Worker’, my doctor or the District Nurse Team didn’t do the initial assessment. I have made a complaint to our local CCG team, but that have said since the initial assessment did not go any further to the CHC they can’t do anything. My complaint was why is it Social Services seems to wield all the power in doing the initial assessment? It seems insane that a non medically trained person with no access to medical records of the doctor/hospital/district nurse team should be in the sole position of filling in a complex form and then deciding whether it goes to the CCG or not for a full CHC assessment. The Local Authority having so much power seems to be convenient way of blocking access to the CHC full assessment. I think there’s something rather unsound about the whole process.
There does not seem to be any way that a CCG can refuse to fund a patient that is actually fast tracked by a doctor.
Although, I suppose that they could convene a full MDT very quickly to overturn such fast track action.
My father has advanced dementia and has been in hospital for 8 weeks following a UTI. He has been ‘medically fit’ for 5 weeks but waiting for assessment before discharge to a nursing home. WE had the DST meeting on Tuesday and it was agreed that CHC funding would be recommended to be ratified by panel. The discharge manager later decided, having spoken to her boss, that she was not recommending so it would go to panel as a split decision. I was told this yesterday & Panel meets on Tuesday. I want to add my thoughts to her report(which I have not seen) Dad scored 1 severe (for cognition) 4 high & 3 moderate needs. However his ‘no needs’ are breathing and ASC. He is doubly incontinent, unable to weight bear so spends most time in bed, occassionally being transferred to chair, he cannot feed himself and often refuses food & drink so has lost 4kg whilst in hospital. I get the feeling that as he has no necessary medical intervention needs they will say his needs are social & refuse CHC. However without his Alzheimers (a medical condition) he would have no need of the social aspects. Also he is to be discharged to a nursing not care home which surely suggests health needs. Any suggestions of anything I should add to my input tp hopefuly sway the decision and avoid need to appeal. Thank you
Im delighted to report that Dad has been approved for CHC Funding and has finally left hospital for a nursing home. Thank you for the great advice on this site which really helped in preparing my submission to the panel
Have been following your excellent advice/booklet etc for some time and 2 days ago my mum had a DST and was refused funding. They told us this on the spot, despite having not yet been to MDT. I & my husband and my specialist representative ( a solicitor) were present along with masses of uncontroversial evidence that she is eligible (previous funding having been withdrawn at a review which I didn’t even know happened, let alone attended!!) She has vascular dementia, virtually no cognition (lacks capacity & I am Deputy), a whole raft of psychological/behavioural/communication/drug/medication issues but is relatively low in physical symptoms.
They started their meeting (2 from CHC, one of whom said she was representing ‘social care’ – need to check this when I get the transcript, but surely not procedurally correct, and a nurse from the home) whilst we sat in another room waiting for them. They clearly had scored all the domains already and barely gave the grace to listen to any evidence at all – kept overriding everything with clearly irrelevant drivel i.e. they said my mother sat in the common room and played a board game. When I objected that this was absolutely impossible as she doesn’t have the cognition to do so they said..oh, oh maybe it meant a ball game!! Utterly bizarre. The whole time the 2 from CHC sat punching into the computer, though one was friendlier. The other commenced the meeting with an angry objection that she wasn’t informed I would be bringing a solicitor or my husband (who happens to be a pharmacist) – this is not true as I clearly told the CHC that they would both be attending – in fact my solicitor had rearranged the date to be present.
At one point they told me that the nurse in the home knew my mother better that I did. Needless to say I found this incredibly offensive as well as being patently untrue. They produced no evidence at all (charts, medical records etc) – merely relied on the anecdotal from the nurse who I have never actually seen interact with my mother on any visits – and disregarded our evidence. Lies were told i.e. that she had recently started on Risperidone (a potentially harmful drug to dementia patients such as my mother who also suffers severe hypertension) when all care records and 2 previous DST’s state she has been on this drug since Nov. 2012 without any psychiatric input or apparent review.
And most bizarre of all – after the meeting closed and my husband & I were reviewing the outcome outside of the care home they sent the nurse to find us and ask my solicitor if he had recorded the meeting!!
I would love to know whether anyone has come across this one before?
Needless to say I will be looking to an independent review, but am distressed even further by reading on your site that there is increasing evidence that even this is not necessarily independent any more.
Thank you all for the advice/shared experiences etc on this site and I would be very glad for comments/help/opinions on my experience so far too.
Thanks for your advice Angela. I will. I am on the ‘warpath’ after such a rude and humiliating meeting and my next steps will be to challenge absolutely everything and ask so many questions that they get absolutely sick of me. I know she is entitled to the funding after all my researches ( and my solicitor, who specialises in CHC cases thinks so too – last I spoke to him he was pretty angry at the meeting too) and I take heart from the many brave people on your site who also ‘never gave up’. Thanks also to Chris Ghallager whose advice I have found particularly useful.
I am so charged up now and ready to take them on after having read all these comments, and Chris here seems to know his stuff, and with the help from here I will also add to my dealings with the CHC. Thanks for such a wonderful site.
What I keep getting told by people who have been refused funding is it’s not the scores in the DST its the 4 characteristics:
Nature
Intensity
Complexity
Unpredictability
Would anybody have examples of what they mean? I thought it was all about the scores.
I have found some brief examples on page 11 of a booklet called Nursing assessment and older people. If anyone has anything else, I would also be interested as it’s something I am struggling with too.
Chris mentioned earlier about drugs score. The descriptor for a moderate score reads:-
Requires the administration of medication (by a registered nurse, carer or care worker) due to:
non-concordance or non-compliance, or type of medication (for example insulin), or
route of medication (for example PEG,).
OR
Moderate pain which follows a predictable pattern; or other symptoms which are having a moderate effect on other domains or on the provision of care.
I think that merely having to administer the drugs covertly is covered by this score. To score severe I think it would require some further significant degree of non-compliance where the patient pulls out the PEG or refuses to have injections “placing them at risk of relapse”. It seems to me that there is a significant increase in the problem of administering the drug between the moderate descriptor and the severe descriptor. But I do not think that sufficient attention is given to the careful monitoring requirements when the patient is being prescribed a cocktail of drugs all of which have different side effects. So its a question of building up a picture of the need to watch out for adverse symptoms and adjust the medication accordingly and of course this is all made more complicated by (a) being unable to communicate effectively to tell you how they feel, other than it being blindingly obvious that one is now experiencing acute headaches.(b) their inability to understand why it is necessary to take medicines and being non compliant – so there is interaction between the Behaviour, Cognition and Communication domains. In all probability, they have some notion of what is happening and this is probably causing depression, so that affects the Emotion/Psychological domain as well.
Remember the Pointon case, where the Ombudsman held that Mrs P had become a skilled carer providing the same level of health care as a qualified nurse could provide and which was required by Mr P. You are in much the same position as Mrs P.
Would you please be able to tell me the National Framework position on this. It’s from the panel after an assessment: “A primary health need cannot be identified. There are identified health needs in Behaviour, Nutrition, Continence and Breathing but they do not appear to be intense or unpredictable. I believe that a joint funded package would be appropriate”. Thank You
I thought health needs were NHS not local authority: “There are identified health needs in Behaviour, Nutrition, Continence and Breathing but they do not appear to be intense or unpredictable.” The intense and unpredictable thing keeps coming up, so what part would the NHS pay for and what part would be the local authority pay for? And there is no mention of the other domains. Behaviour Severe, Cognition Severe. I will follow the link. Many thanks.
I had a look at pages 14/15 of the DST and this is a section which to me sounds like a get out clause: “This may also, depending on the combination of needs, indicate a primary health need and therefore careful consideration needs to be given to the eligibility decision and clear reasons recorded if the decision is that the person does not have a primary health need.” I can hear them now saying oh well its all about the 4 key indicators.
The link is called ‘Nursing assessment and older people’ http://www.rcn.org.uk/__data/assets/pdf_file/0010/78616/002310.pdf
Thanks Chris, that was exactly the answer I was looking for, because the MDT people assume we don’t know squat and they can tell us anything. I got in touch with the council to see if they had an advocate that could help at the assessment, but it seems I could get all kinds of help if it was social but not if it was CHC. Everybody is afraid of getting involved, so you finish up on your own against these people. Again thank you for your help.
Hi. Would appreciate a view on whether the LA social worker can ‘enforce’ my father (dementia / health needs) to be moved from a care Home where he has been for 4 years to a Nursing home on the back of a ‘Nursing Needs Assessment’ and a CHC initial checklist assessment. The CHC checklist was conducted by a District Nurse and assessed my father as at the highest in 5 domains including ‘Behaviour’. My father clearly needs Nursing care now, however the LA have identified a Home that he can transfer to (seen it, nice & efficient enough but nothing special ) that meets their funding limits. I have PofA on his financial affairs, and going this route his pensions will contribute a considerable amount to diminishing the LA’s own contribution and the nursing contribution from the NHS.
It just seems like the NHS and LA have engineered this route using the ‘tools’ available, as the least costly for them rather than waiting for the CHC to go to the DST to see if full funding would apply. How can I get them to move him to a better nursing home (cost more but better care) without involving myself in the ‘top-up’ process and possibly being landed with that on an ongoing basis if the CHC fails at DST?
I know he needs full nursing care – care that the residential home feels at risk about, so he needs to move, quickly.
Desperate for a quick answer or view!
Hi, I’m not sure if this is the right thread but I am appealing a CHC panel decision that my Mum is not eligible for NHS CHC funding. There are many issues but one of which is that the MDT recommendation was that ‘her current care needs can be well managed in a dementia high dependency residential care environment’. Can anyone clarify what this means? Mum has had Parkinson’s for approx 14 years and Dementia in Parkinson’s with mobility problem, including high risk of falls due to possible foot drop, and vivid sometimes very disturbing hallucinations.
Any help would be much appreciated.
Thank you
Julie
The common practice is assessing MET NEEDS which is not the correct procedure, resulting in people with nursing needs being placed in residential care instead of nursing care thus ending up in A&E more frequently, with UTIs falls etc. Also it is common practice to downgrade needs, so placing people in the position if finances allow to self fund. Although it is Social Services role to find beds it does not remove the responsibility of the NHS to pay.
Problem is the CCGs hold the purse strings so therefore have an obvious conflict of interest when it comes to funding. Perhaps it would be more helpful for people if there were independent assessors doing CHC assessments.
Having appealed against a CHC decison with regard to my Aunt we have been sent a strategic Health Authorities Appendix 2a questionnaire to complete. Whilst the Nursing home (the clue is in the title!) has drafted a response I am concerned that anything written on this form may be held against us with regards to the appeal and would be grateful if you can comment on whether completing these forms is commonplace and what further assistance we should engage – GP, Solicitors, etc.
Hi – would anyone know if CHC do Direct Payments like the L/A do? Thank you.
Barry
I’m very new to this so please excuse my lack of knowledge. My situation is that my mum (86) has Lewy body dementia and a fused spine and is cared for by my frail dad (86) Her mobility has been declining for years, she shuffle walks with a zimmer (supported by dad) and used a wheelchair. Dad does all her care needs! Cooks and cleans etc we me going in daily to check and support them. She had a UTI 2 weeks ago which sent her into rapid decline, unable to stand, weight bear, not knowing where she is etc. She was discharged back home for care in a ‘virtual ward scheme’ Including hospital bed and equipment, care aides coming in twos four times a day supported by nurses and ot’s etc. As she can no longer stand it takes 2 people’s to move her, however during the night she shouts him and he tries to toilet her obviously this lasted three days before she was admitted again. (With Lewy bodies she acts out her drams so now the sides are up on the bed as well) They have mentioned concerns about mum and dads safety, safeguarding?, concerns about dad being able to give med’s etc, the need for care in a home ? She has now been transferred to a ward to see if any mobility comes back and everything is now up in the air!
I need help / advise on how to handle this correctly! Can I insist on a delayed discharge until relevant assessments including continuing care assessment is done. Can they move her to some kind of respite care? And do assessments there.
Her now being unable to stand has thrown us into new territory, we are being told a hoist is out of the question for dad to control and that two people need to lift her. Although mum and dad are not accepting of the situation and dad just wants her home to care for her and she wants to go home! The whole situation is really sad and just want the best for them so any advice on how I should handle this would be greatly appreciated as I’m totally lost now?? Many thanks
I’ve just recently appealed my mother’s CHC’s decision and would like some help with the 12th domain on the DST. My mother is type 2 diabetic, which I put in this domain because of health complications risk, low blood pressure, feet problems, hypos etc. The assessors wouldn’t allow this because it is diet controlled and not by insulin and it was mentioned in the nutrition domain. They said the 12th domain is for people on dialysis etc. Just wanted to know if this correct.
Thanks
Sue
My dad has just had the 3rd CHC assessment refused. I appealed the first but ran out of courage at the thought of a review panel. Dad receives NHS funding. On the 2nd assessment I was told that the information I had gathered re my dad’s health needs could not be accepted as I had not told a nurse. I diligently continued to record my dad’s health problems and discussed them with the nurse. Now at the 3rd assessment my information cannot be accepted because there is nothing on his notes that supports my observations. My dad suffers from dementia, is bed bound and frequently hallucinates and has terrible delusions. He also falls into deep sleeps when he cannot be woken. When this happens the carers write “appears to be asleep” and at meal times “declines food” when he is actually asleep. When dad’s hearing aids are not working (which is often) his behaviour is not good, but this is not recorded. He has other health issues -catheter insitu and immobile. Does anyone know if it is correct that my information cannot be taken into account?
Thanks, Margaret
Has anybody had any experience of CHC assessments for elderly people with a history of clinical depression/anxiety which has now resulted in them being placed in a home as they cannot manage in their own environment (at risk/vulnerable). The depression/anxiety has impacts on their health and welfare. They are on a cocktail of medication for regular health problems, depression/anxiety and pain relief (24 hour patches) for Spinal Spondylosis. Mobility is now limited (needs frame/wheelchair), withdrawn from daily life without constant reassurance/encouragement (such as washing, eating – only than 40kgs in weight, social interaction), disturbed sleeping, worrying and crying.
The physical side of her health is a concern but it is her mental health that is causing the decline. She has been referred (again!) to the mental health team for assistance but there seems nothing on the DST that covers this as the primary concern. Any ideas?
I have a couple of enquiries if anyone could help / advise please? My Mum has multiple myloma, osteoporosis, osteoarthritis, anaemia, thyroid problems and on-going UTI’s to name a few health concerns. She also presents as though she may have dementia, however the memory team are unable to assess due to her other conditions .Mum had a fall whilst in respite and broke the head of her femur, she has been in-between hospital and Nursing / Care home ever since. Mum has had a number of falls the latest resulting in the breaking of the head of her humerous, this has taken the very limited (shuffling a few steps with a frame) mobility she had and she is now unable to weight bear without the support of two people. She is extremely unsettled, has hallucinations, has lost her appetite, constantly refuses food and drink and also refuses to take her medication. Initially mum’s McMillan Nurse completed a Fast track for CHC and it was awarded (this was prior to the falls) She was re-assessed in February and is now deemed not eligible and my Dad (88 with lots of serious health issues) is worried sick about finances and having to pay etc. I really cannot get my head around the whole situation, so any advice at all would be hugely appreciated.
Secondly, when the local CCG assessed mum, they sent me and Dad a letter to inform us of the decision, they also included in the envelope the completed DST for a gentleman resident in a local MHU, by mistake which is I believe a huge breach of confidentiality. I informed them straight away and was advised to dispose of the paperwork immediately by several members of staff, including one of the CCG Team leaders and my mum’s social worker. I am hugely concerned about the whereabouts of my mum’s confidential information as well as the risk of identity fraud etc. I have written a letter of complaint to the CCG, but should I be informing anyone else? I feel as though this situation is not been taken seriously by the CCG.
Many thanks.
My Mum has very recently been declined CHC funding following an assessment by a CHC nurse and a social worker. My 82 year old mum has multiple myeloma and other health issues and has recently had 2 severe falls whilst in respite care, the first breaking the head of her femur and the second breaking the top of her humerus. My mum’s mobility was very limited prior to either fall due to the curvature of her spine caused by the myeloma and pain, she could only walk with a frame for support. Following her falls mum is unable to weight bear independently and unable to support herself due to the breaks in her hip and arm and shoulder. Because of her lack of mobility mum has had to move to a residential home because my dad who is 88 and has a number of health issues is unable to care for her. Initially mum was awarded CHC funding after her McMillan nurse fast tracked the paperwork, mum’s health has not improved and has in fact deteriorated, however she is now deemed to be no longer eligible. My mum has been assessed for dementia since being admitted to the home. She is currently placed on an EMI unit because she presents confusion. However, a conclusion cannot be reached because the confusion could be due to the advancement of the myeloma. It seems ridiculous that my mums health is worse than ever, however, she is deemed to have only social needs. In addition the copy of the DS Tool that we have received has incorrect information, it states my mum’s gender as male and has the wrong GP information, initially I was sent the wrong DS Tool, I was sent a completed form belonging to a gentleman placed in a mental health unit. I would appreciate some advice about whether I should appeal the decision. I have found this website by chance today and it is fantastic – thank you to everyone who posts.
In 2013 my mum was diagnosed with Alzhiemers which we were managing. In Sept 15 mum had a major stroke leaving her paralysed on her right side, expressive and receptive dysphasia and newly diagnosed vascular dementia – creating a diagnosis of Mixed Dementia. After a few weeks being discharged to home (she lives alone) with a care package, mum was re-admitted to hospital with heart failure. She was treated and discharged back home – sadly on the way home in the ambulance she suffered a second stroke and was immediately returned to hospital where she remains. In this time her mobility and congition have deteriorated significantly and we have been advised that her heart failure is severe- she is not mobile, not orientated to time or place and has daily bouts of severe crying and distress begging to go home. She is not aggresive but extremely distressed. Mum can no longer live at home as she needs 24 hour care and I have been looking for a suitable nursing home for her – this in itself is difficult as they are either awful, full or can’t accommodate my mum’s needs. Under the suggestion of the hospital staff we attended a DST meeting last week with a very unsupportive social worker who we had never met before (our current social worker has not been in contact with us since December and never returns my calls) We failed to meet the needs based on the scoring of mum’s Cognitive and Psychological needs – despite robust examples from myself about the unpredictability of mum’s behaviour and examples of her lack of ability to communicate or initiate anything for herself I was told that she did not meet the levels required and that her behaviour was not behaviour but cognitive and that she was compliant with care. This is true, because she needs constant reassurance. The RMN assessor agreed that she needs 24 hour care and that there is indication that she will very soon move into a severe score and that although she doesn’t meet CHC she does qualify for nursing care. My anxiety is that mum doesn’t have any money or property and we have no means to pay for care and I am afraid that this will mean that she will be put into a care home that will not meet her needs and that she would not be happy in. I have visited a great many of them and they are awful, dark and smelly. I am fighting but in the interim, mum is sitting in a discharge ward and not being properly cared for and I need to find her a good place where she will be properly cared for and have an outside chance of settling. The hospital want to discharge her and the ward is so under staffed she is not washed or changed regularly enough and they don’t ever seem to brush her teeth. I often find her with a yoghurt pot in front of her with the lid on which she has not physical or cognitive abililty to open or feed herself with – I am truly desperate. Do you know in this instance what level of funding social services will pay? Mum’s care package at home comprised of 5 calls a day and was expensive but was signed off based on her high needs and yet the social worker is telling me that this budget will not apply to a care home and that it will just be the standard fee agreed. I am confused beyond measure and would appreciate any advice.
I wondered about what can and can’t go in the 12th Domain. Can personal hygiene care (washing, dressing, toileting etc) go in there? When, I asked about this at a dst meeting, the nurse assessor said that it was taken into account elsewhere, which meant she made a few comments under the Psychological Domain. However, my mother, who had dementia (now passed away), needed a lot of personal care, being unable to do anything for herself, and I feel the quantity of this type of care gets lost when considering if there is a primary health need. I also asked using the domain for vision (she had cataracts and wouldn’t wear her glasses) and deafness (she was severely deaf and wouldn’t wear her hearing aids and was told these were included in the communication domain.
Hi – my son is profoundly disabled with learning difficulties, epilepsy, sensory issues, doubly incontinant, behaviour problems, no speech, non mobile, just to name a few of his issues. We were one of the first people in our county to have a personal budget on CHC under the pilot scheme. This lasted for 3 years. During that time we were told we could use his budget for all his health needs, i.e. pay for carers to help me care for him and also to pay for activities like hydro, swimming, etc which got him out, gave him a purpose to get up and kept his mobility going, it was also key in keeping his behaviours under control.
When the pilot scheme ended we were told that although my son’s health needs would be provided for, we could no longer use the budget for anything else so all his activities and going out and about ended. This has resulted in a huge decline in his health, behaviours, and he now has severe anxiety panic attacks because the world that he was used to and knew has been turned on its head.
My son lives with us and we use three rooms for him and all his equipment; it’s not an annex so we get no help with council tax or rent. We pay for all his food clothes etc etc and we have two other kids to consider so we can’t find any more money to pay for activities and petrol, so we are forced to try and contain him at home. I have complained but it got me know where. I was just told it was my choice to have my son at home so I needed to cut my cloth like other people!
I know I’m lucky to have help with his health care needs, but people with complex needs and the mind of a small child like my son need a life too. Maybe it’s just he doesn’t matter in the grand scheme of things, but I feel like I’m being forced to give up caring for him at home because they are making it too difficult to manage to carry on. Cheryl
For months now we have been trying to find out about a Personal Budget for my mother in law but with no response. Since her stroke she has been looked after in her own home with 2 live in carers. My MiL had a stroke 5 years ago and I with the help of her GP set in motion a Fast Track CHC. This has been in existence since but last year despite there being no change in her situation, paralysed, NBM so PEG fed, doubly incontinent etc, the CCG decided my MiL was no longer entitled to CHC funding. In June 2015 her levels on CHC assessment review were:
Behaviour – No needs
Cognition – High, down from Severe in 2014
Psychological – Moderate, increased from No needs in 2014
Communication – Moderate, down from High in 2014
Mobility – High
Nutrition – High, increased from Moderate in 2014
Continence – Moderate (now uses pads), against High 2014 (catheter inserted)
Skin – Moderate
Breathing – No needs, down from Low in 2014
Drugs/Meds – Moderate (all via PEG)
ASC – Low
Following this her CHC funding for 2 live in carers was continued. At review in December 2015 the following were awarded:
Behaviour – No needs, no change
Cognition – Severe, up from High
Psychological – Low
Communication – Moderate, no change
Mobility – High, ditto
Nutrition – High, increased from moderate
Continence – Moderate, no change
Skin – Moderate, ditto
Breathing – Low, up from no needs
Drugs/meds – Moderate, no change
ASC – Low, ditto
Despite the levels being increased on certain parameters and none reduced the decision was to remove CHC funding. Further on referral to IRP not only was this decision upheld but also the panel reduced Cognition from Severe to High and Nutrition from High to Moderate. Since December we have been trying to understand and get an explanation why, despite little change either in her health or the markings, funding should be removed. The only explanation we can think is cost savings.
A complication is that since June 2015 we have, at the suggestion of the CCG then, changed the care agency. Being naturally suspicious I believe they have taken this as an opportune time to change their original decision. So since 2015 no finding being provided the family has had no alternative but to fund my Mils care ourselves. We believe the CCG are incorrect and we are entitled to continuation of the funding, if not in full then in part since 2015 hence our request for Personal Funding. Any help or advice would be most welcome as we are coming to the end of our tether.
Hi, I’ve just come across this fantastic site and hoping to get some advice – apologies for the long post. My mum is in a care home which is closing down (we were given 6 weeks notice – we have just over 3 weeks left). My mum is currently receiving Band C Local Authority funding of £530 a week and has to make a contribution of £197.00 a week. We have not found any suitable homes which could accommodate mum’s needs with the current funding. She owns a bungalow which my brother co-owns and has lived in for the past 10 years, but has been told he has to buy mum’s share (at a reduced rate). We have found a couple of nursing homes costing £750-£800 per week but cant afford these on current funding. I am really worried about what is going to happen to mum. Without any family involvement a team of Admission Matrons went to the care home and assessed my mum, no nursing staff from the care home were actively involved but mum’s file was apparently reviewed. I appreciate that this was not a full assessment but I feel its inappropriate for my mum to be “questioned” and assessed by people who have absolutely no idea of her needs and mum would have no idea of the importance of her responses to their questions. They used the CHC checklist. They have put all”C” apart from 1 “B”. However, I have emailed the recently appointed social worker (who I am meeting tomorrow) to say that I do not accept the results of the assessment and my reasons (thanks to the advice on this website!). My question is whether my mum is eligible to receive CHC funding, Nursing Care funding or at the least Band P LA funding based on the fact that: She is registered disabled – or at least she was prior to going into the care home, due to no mobility due to severe osteoarthritis and osteoporosis. She has Type 2 Diabetes, Vascular Dementia, cataracts, deaf but refuses to use her hearing aid, is doubly incontinent unless taken to the toilet regularly by care staff – she doesn’t ask to use the bathroom but she has been classed as C – “continence care is routine on a day to day basis” Whereas it is B “continence care is routine but requires monitoring to minimise risks, for example…chronic urinary tract infections” – mum suffers with repeated UTIs including a “serious” UTI at her previous care home. She can not weight bear at all – cannot stand. She can not move in her chair, has to be moved to be made comfortable by two carers but has been graded C – she is definitely an A. She does not eat solids due to either physical or psychological reasons – she chokes, attempts have been made by hospital to establish the reason but mum got too distressed to have the camera down her throat, she takes hours to consume a yogurt and/or fortisips – gets assistance to eat, but has been Graded C whereas she should be an A – nutritional status at risk and may be associated with unintended or significant weight loss. Her weight has been a cause for concern, dropping to 4 1/2 stone (5ft 5) but her current care home has done wonders in helping her gain weight but now about 6 stone but that is with a great deal of encouragement and assistance but she only drinks Fortisip drinks, coffee, squash and smooth yogurts – the CHC said her nutrition was C and that she refused normal oral nutrition. She has suffered from pressure sores (whilst in hospital and at a truly awful care home she was placed in before her present home). Drug Therapies has been graded C whereas it should be A “Moderate pain or other symptoms which is/are having a significant effect on other domains or on the provision of care”. I realise that I am rambling but I’m struggling with all the information I am attempting to take on board to fight mum’s corner. Any help/advice is so greatly appreciated. Also, can someone point me in the direction of the Local Authority Limits(?)
My husband with frontal lobal dementia is in supported accommodation as directed by hospital and I would like to know if legally I can be regarded as a dependant as i live separate in my own home and am dependant on his pensions. this is for housing benefit purposes currently being asessed. I was told that legally he is responsible for half my household bills and my upkeep. Im concerned that he should get full housing benefit of 412 which is his rent. which the council may try to regard him as a single person. He needs 24 hour care.
Thank you for at least confirming we have a case. In March the CCG wrote regarding my Mil’s eligibility for NHS CHC and said:
“Following recent review assessment the NHS CHC Team identified that you do have nursing needs which can be funded by the NHS however I’m sorry to say that we have concluded that your care requirements no longer indicate that you have a primary health need and that you are no longer eligible to receive full NHS Continuing Healthcare funding.
A copy of your completed Decision Support Tool assessment and a leaflet explaining how the decision was reached is enclosed.”
As far as I can see this does not detail the way the process has been carried out nor the way the eligibility criteria has been interpreted or and why the CHC assessors and the IRP decision makers changed the scores.
I have a copy of the CCG, Eligibility Panel report which I assume is the IRP. I was not involved then. The Panel Decision states:
“Panel concur with the rationale and recommendation of the health representative but acknowledge that the Social Care Practitioner was not in agreement with the recommendation.”
Having read through all the DST made previously and researched and read articles, including your excellent book, I cannot see how this decision meets the Coughlan Test. Pamela Coughlan was totally paralysed, as is my Mil. PM could eat with help, my Mil is NBM and fed via a PEG. PM could speak and was totally coherent, my Mil cannot speak and has poor cognivity. PM was able to use an electric wheelchair and via voice control use a computer, my Mil is only able to move from her bed to a wheelchair through the use by carers of a sling and is not able to do anything for herself let alone use a computer. I do not know if PM was incontinent, my Mil is doubly incontinent, nor anything about PM’s meds/drugs.
Nonetheless I feel that my MiL primary health needs are as severe as those of PM and following the judgement set down my MiL does qualify.
I am considering writing a letter similar to that in your book referring to the Coughlan Test as well as asking for the items you have suggested. Is this the right course of action as it would seem we have exhausted the assessment/IRP routes. I would welcome your comments
David
Since last writing my MiL has died. Notwithstanding I believe we still have a right to appeal against the decision made following the last Decision Support Tool (DST). After receiving the DST from the Multidisciplinary Team (MDT) the CCG referred it to a panel. The DST was carried out in December 2015 and the ‘panel’ met on 30 March 2016. A letter was sent dated April 2016 advising my MiL no longer met the criteria for primary health care so was no longer entitled to CHC funding.
In fact no funds have been forthcoming since September 2015 so the family has funded the cost of care. The reason was that the previous agency providing the carers were negligent and the carers less than trustworthy let alone suitable for the work they were supposed to be doing. The family took the decision to change carer agency. The CHC were aware of this but after the change advised
1. the care agency chosen was too expensive and they were not able to contract with them
2. they suggested changing to another company on their providers list
My understanding is irrespective of any appeal or dispute regarding the last assessment the CHC funding should still be paid until the final decision is posted i.e. April 2016. Is this correct?
Knowing this then I can proceed further both regarding the non payment from September to April then challenging the decision itself.
I have just lost a claim for my late Aunts funding, she was in a care home for 6 years self funding, using all her capitol and selling her home. They said she needed 24 hour care ,but social not Primary Care. She did nothing for herself, doubly incontinent, didnt dress, wash, go to toilet unless taken, didnt want to eat etc etc. Exactly what is classed as Primary care in laymans terms please. I am 77 and dont understand what they are looking for that would get us a refund. Help.
Please can I have your feedback on which domain the need for care/control of Gingivitis (potentially leading to periodontitis) should go. Is it Skin or could it be Other? As it is a disease and as in this case, as a result of poor attention to oral hygiene, it feels like it warrants a domain to itself. Symptoms include pain, causing a reluctance to eat and drink and therefore overlaps with other domains such as drugs and nutrition. This is a nasty one which is easily overlooked. Any thoughts?
Hi All, Having now dispensed with a solicitor who I feel sadly does not know enough about NHS Continuing Healthcare I am going to attempt to get it myself for my late dad.
Dad had been living at home with me and had 4 calls a day from carers. Dad had a fall and ended up in hospital in 2008. Dad had early onset dementia at this time, he had had a stroke which effected his left side, numerous TIA’s, a heart murmur, prostate cancer and depression and was already at a high risk of falls. I was told by dad’s social worker at the time that he would have to go into a nursing home as they could not put in any more care at home. At this time I was not even aware of NHS Continuing Healthcare and neither was my dad. He had previously been assessed that he did not have to contribute anything for the calls he was having at home.
In paperwork I discovered that a CHC Checklist was supposedly done in November 2008 whilst dad was in hospital. I was not notified of this because they supposedly said that dad fully understood what it was. At the same time they have written comments saying dad did not always remember things. Evidently an outcome letter was also supposedly sent to dad – very strange as he lived with me and it never arrived at my house.
At this time they advised (in the mysterious letter) that dad did not meet the criteria for a full DST. Obviously if I had been aware of this I would have strongly disputed it.
Despite me requesting on numerous occasions for a copy of the Checklist it has never materialised.
Dad did get the Nursing Element paid for him. I feel that I should have been able to be part of the Checklist (if it really did take place) and I was under the impression (please correct me if I am wrong) that a Full Assessment for NHS Continuing Healthcare should be held prior to the Nursing Element being authorised.
I have also never ever seen any sign of a Portrayal of Needs.
Thank you for your comments. I was under the impression that an NHS Continuing Healthcare Assessment should be undertaken before an assessment for NHS Funded Nursing Care. I was also under the impression that if a Checklist takes place the persons carer or representative should be involved especially if the person has been previously diagnosed with early onset dementia and short term memory loss. I have also read that the decision should be clearly communicated to both the person and their carer/representative. Are you able to confirm this please? Thank you in advance
Same position as Jane, can longer afford our solicitor and anyway we appeared to know more about the Continuing Healthcare process than she did. We have got part elegibility ( 6 weeks) on a retrospective review for 2012/13, based on a comment in the daily notes by a carer, not sure how usual this is, but the needs had not increased anyway, they had always been unpredictable, intense and complex. Local panel early next year. We have all the care notes including Dr and Consultant yet the Decision Support Tool was completed from daily care records only. The assessor seemed to pick the comments from the records that suited them ( despite our solicitor’s input) so I am having to go through all the records and quote everything they conveniently failed to. Any advice would be appreciated and I think I would rather have my teeth pulled than go to this meeting as afraid the will intimidate as assume we know nothing.
This is a random comment but does anyone know if a Multidisciplinary Team can consist of 3 people from Continuing Healthcare?
I got the Retrospective Review paperwork back today and out of 28 months being assessed, they allowed mum 7 saying her behaviour wasn’t bad enough or unpredictable, intense, complex enough to warrant a Severe in Behaviour.
My mother went into a nuring home with severe vascular dementia in June 2012. Previous to her admittance her behaviour was very aggressive and this was noted on Care Plans. The Nursing Home tells me that Nursing Care Funding was applied to respite care before mum lived at the Home however no CHC assessment had been done on mum til August 2013. Mum went into the Home in the June 2012 and no Social Service care plan review was carried out until February 2013. This should have been done at 6 weeks. This did kick start the CHC assessment in August 2013 which even though she had severe vascular dementia, completely immobile, unpredictable behaviour and aggression, she failed. I appealed. I never heard anything back. In October 2014 a second CHC assessment occurred and she got it.
I put in a Retro claim back to when she entered the home. They have said they will pay from March 2014 but that her behaviour wasn’t documented enough beforehand and it is decided that is because her behaviour wasn’t bad enough.
I believe mum had a Primary Care Need in the dementia and LA shouldn’t have provided her care because it wasn’t ancillary or incidental to accommodation being supplied.
The report also states that;
“…The CCG would prefer to have the LA representitive on the Panel, however the LA have declined to engage in the appeals process with the CCG’s CHC team. Panel note that the LA do attend CHC assessments and engage with the disputes process locally. The CCG continues to discuss with the LA the position on active engagement in the appeals process.”
Is this correct?
The whole document talk of evidence submitted and notes from the Home and such, but not once does it mention my input or even try to dispute points I made in the last document I wrote stating why I believe my mum had a Primary Care Need from before she moved into the Home.
I will now appeal this but really need some good pointers to push this home. It all hinges on the fact the Care Home managed her care needs and didn’t make a hypervigilant documentation of all her behaviour. Of course because a need is managed doesn’t mean it doesn’t exist or because it is ‘stable’.
Any advice would be appreciated and sorry for the long post.
Wow, what a good website, I only found this yesterday as I’m currently exchanging emails with our new social worker. My father is 56 and has a rare genetic terminal illness called spinal cerebellar ataxia type 2, in March 2016 he was wheelchair bound, was self neglecting, eating cold food as he couldn’t prepare or access his kitchen and sliding around on his backside at home as his flat was too small for an electric wheelchair. We were begging him to get help for ages, a friend finally convinced him. His local L.A. came to do an assessment and wrote things like: doesn’t like to cook, to explain away his inability to prepare food or access his kitchen, (he used to love cooking!)
Not one physical assessment was carried out.
Two weeks later he fell and broke his pelvis and laid for hours on the floor before he managed to call me and I called ambulance. Spent 6 weeks in hospital, the hospital didn’t want to discharge him unless it was into care, but my father insisted. He deteriorated rapidly.
He had a care team In place 4 times a day, when he left hospital; my father refused all care with them, tried to do everything himself, food everywhere, and was incontinent. Care team refused to clean it up, I had to do 500 mile round trips 3 times a week to clean up.
After 4 weeks I found a nursing home and paid 4 weeks out of my life savings – £1069 a week for him to get help. I asked for a variety of assessments, it took 5 months before a single one was carried out. He was sent for 4 weeks to a neurological center for tests. He scored 49/100 on the cognition tests, he went there weighing 56kg, he’s 6foot 4. They said he needed specialist nutrition, 24 hour care, they put a catheter in situ as he was always in retention and bed rails up at night as he refused to ask for help and was very high risk of falls and that he was not able to rehabilitate and would deteriorate. They sent him back to the nursing home needing two carers in place for personal care transfers etc and specialist equipment.
I’ve been asking since the day he entered the care home for Chc. Originally I asked for the fast track, was told he didn’t qualify, apparently he’s had 2 checklists done too all before this 4 week assessment by people who were telling me he should be living independently. Me and my sister have LPA in place, we have asked for copies of these assessments numerous times, non forthcoming.
He was however given full funding by the social as they were calling it temporary accommodation and I was refusing/ couldn’t pay anymore. I offered to move him into hospital but was told by social worker his care needs were being met and not to move him.
However January 3rd 2017 the social worker organised a meeting with my father, who was very surprised to see me at the meeting, but he was there to tell my father that his funding would stop on 31st January and get him to agree to move to a cheaper home and to pay for nursing care himself.
At that meeting the lead nurse said he needs 24 hour care. My father can’t comprehend that sort of questioning or information. Everything my father said, the social worker had to look at me for a translation as his speech is so bad, yet one of the reluctant assessments carried out was by the speech and language therapist again with no input from me, and I have a copy of that letter, it said he has no problems with communication! When I asked my father to relay the content of the meeting back to us, he couldn’t. At first the social worker tried to play as though he knew nothing about the 4 week assessment and was again mentioning independent living, but at the end of the meeting the social worker offered to send me a copy of the report produced after the 4 week assessment!!
So now I have asked in no uncertain terms that I want a full 2 stage assessment carried out with input from his family and the report from the specialist center taken into account, the social worker has said that it’s difficult funding to get etc and he doesn’t think my father will qualify, but he’s moved quickly for once and there’s a checklist being carried out on 23rd January, however I signed the contract at this nursing home and am liable for £1069 a week, about 3 times what I earn on a good week!
I tried to find a cheaper nursing home but I live rural and the only one available was for physical disabilities and they refused to take him on account that he had cognitive impairment as well! So I’ve told the social worker that on 31st January I will be removing him from the care home and admitting him to hospital.
Am I doing the right thing? Should I be demanding a fast track assessment again? Any advice would be greatly appreciated. Thanks
We have just had the verdict back on mums assessment:
“Irene does not have a primary health care need and therefore does not meet eligibility criteria for NHS continuing health care. The rationale for this decision is based on the 4 key indicators, nature, intensity, complexity and unpredictability. It was established by the MDT that Irene’s needs were not of a nature of intensity, complexity and unpredictability which would indicate a primary health care need. It was identified that Irene requires 24 hour care within a safe and secure environment where she can be supported to maintain the activities of daily living. The care Irene requires on a daily basis is not above and beyond that which would be expected to be provided by the local authority, social services. The health needs of Irene are incidental and ancillary to the provision of social care.”
My mum has Alzheimer’s. She is not mobile, cannot move by herself at all and has to be turned in bed by carers to prevent bed sores, she is always in bed now. She cannot communicate, cannot feed herself and cannot eat solid food even when fed. She is doubly incontinent. any medication has to be controlled by carers as she would not remember to take them.
How bad does one have to be to qualify for this funding? I don’t understand how what she needs is just Social care? If she didn’t get it, she would not survive. Do we appeal?
Further to Carol’s comment, this is standard wording and and bears no relation to the actual person assessed .We have had similar. Check out Care To Be Different website on how to appeal. We are currently at resolution meeting stage and after 10 weeks have yet to receive a decision because apparently of the numerous comments we have made that they have to address.I am getting so bogged down looking at definitions of everything I am doing it at work when someone asks me to source something I ask ” if there a definition for that ” But it is worth doing as you can counter their rationale better.
Hi there. My dad was in hospital and they needed his bed so of course he had to go. We quickly found a nursing home which is what the social worker told us to do. Before dad was discharged we did have a Multidisciplinary Team meeting and it was agreed by all members of the panel that dad should be awarded Continuing Healthcare (CHC) based on the decision making tool?? When he was discharged with a few weeks the home (and I guess the local health board held another “meeting” without me being present, although my mum attended and they deemed it that dad was no longer entitled to CHC and told my mum that dad would just be getting Funded Nursing Care. Sadly mum passed away shortly after dad went to the home and I am trying to process a retrospective claim (as dad also sadly passed away). Each time I asked them to hold another CHC meeting as dad had been getting worse the results were the same he did not meet the criteria. I am still waiting for the claim to be processed I am apparently number 26 in the queue (this was instigated 12 months ago! Do you think this could be a valid claim? Thank you.
[…] care in Management is right for those which might be trying to reinforce their service within the social care and health care region and have legal experience within the subject. It affords beginners with the chance to […]
My father had a mental breakdown following my mum’s diagnosis with Cancer. He was in a terrible state. A doctor came out in the night from A&E and recommended he be sectioned immediately however nobody was able to come for him ‘out of hours’ so we waited 4 more days for a psychiatric doctor to come and assess him! We even tried to take him to A&E in between but were turned away. The assessment report said that he “urgently required a hospital bed but there were none available”. Request made by the mental health team to social services for “urgent respite care as he required medical help and could not be looked after/supported at home as my mum was undergoing chemotherapy”.
Social services contacted us 6 weeks later!!
The mental health team said they could support my dad on a daily basis at a nursing home so we had no other option, at an extremely challenging time, other than to find a place for him. I cant describe the situation at home, he just could not stay there in the state he was in.
When social services did make contact eventually they went to assess him and their findings concluded that he did not have social needs that they could support. At this point he was in the nursing home but presenting much better on his 3rd adjustment of medication.
He has just come home and we feel as though we have our dad/husband back after what has been, really a dreadful time. He spent 11 weeks being cared for in the nursing home with daily visits from the NHS mental health team. The home fees are £650/week.
From reading this site I concur that perhaps his needs were not Social and that we were initially pointed in the wrong direction, they were Health Care Needs and as such the NHS should have funded his care. Had there been a mental health bed available, or had he been sectioned he would certainly not have been liable for the cost.
As his care was temporary is the NHS Continuing Healthcare framework valid? Who should I be directing my claim to? Social Services are not interested, perhaps with good reason, but the NHS have a duty of care, surely?
My Father was in hospital for 2 months. We weren’t given a formal diagnosis but were told it was probably a form of dementia. Eventually a Decision Support Tool (DST) was arranged but before it took place we were told to move my Dad to a care home. The social worked wanted him in one place but when we visited this home we found it wasn’t suitable for my Dads needs. We found a more suitable home on our own. The DST took place 2 days after my Dad was moved to the home. None of the health care team from the hospital was present so as a result he didn’t qualify of Continuing Healthcare. The nurse at the home had only met my Dad on the morning of the DST. We are the process of appealing but have been told we need Power of Attorney to appeal on my Dad’s behalf. Has anyone else had this experience or can offer any advise? We has only been given a formal diagnosis in the last week. His DST was 3 months ago.
Daily Living activities (Which are covered by LA) are defined as:
Bathing/Washing, Dressing, Toilet Hygiene, Feeding, Functional mobility
My mother in law is bedbound, has to be washed, has to be dressed, is doubly incontinent, has to be fed & has to be fed regularly. She has to have all this done to survive, prevent disease/illness & maintain her dignity. Yet the Lead assessor has said that all of these PLUS administering medication (including end of life medication) & monitoring of infections all come under the jurisdiction of the LA. They have conceded that the oxygen she is on full time & constant blood pressure monitoring come under jurisdiction of nurse. Although they state that the nurse oversees things like medication, skin monitoring, problems with food intake, monitoring of infections etc (which are carried out by carers), they state that the FNC that the home receives pays for all of this. How can we argue this point with them? Many thanks
Glynis, not too different from my relative although she could feed herself pureed food with a spoon and wash her face.She did not leave her bed even for a shower as skin prone to tear, as she would have “accidents” involving skin tears although of course they had to risk this for hospital appointments where she was eventually stretchered to because of the numerous skin tears. Getting back to the point, look at Coughlan and in particular her diary of daily needs easily found on google. Absolutely not comparable, Coughlan got about in a wheelchair and was not bedbound.I can’t see that your relative has any social needs at all. Even washing is healthcare, to be clean and dry to avoid bed sores. If feeding is monitored who would the carers report to if there was a problem with intake? The nurse. There must be numerous charts for all the daily interventions, (that is what they call it in hospital. All of it is healthcare not just what is quoted about being covered by Funded Nursing Care. Continence is a health need, it is a domain on Decision Support Tool! Again dressing did not apply in our case because she did not wear outdoor clothes just a change of nightdress, does not come under a definition of ” dressing “. that’s out door clothes. I wish you could see the 32 pages of our Independent Review Panel (IRP) appeal. We have ripped apart everything in that report because the CCG didn’t read all the care notes and clinical records although we provided them with copies. We also asked social rep at meeting what the social care needs were they paid for, she couldn’t answer. The whole process is a farce because the CCG are accountable to no-one. We don’t rate an IRP because again it is sanctioned by NHS, what chance is there it is unbiased? Our own fair hearing is a Court one, something we are considering, the CCG are not above the law. Keep checking this site and read everything you can, over four years in the process we now know more than a Continuing Healthcare experienced solicitor.
Hi Would anyone be able to let me have some examples of nursing needs as opposed to social needs as Continuing Healthcare keep trying to tell me her needs are social.
Hi I have a Continuing Healthcare (CHC) review coming up soon and my wife is at the end stages of Alzheimers and is registered as “end of life care”. What I was wanting to know – would I be better off not telling them and go through the normal assessment or would I be better off telling them that she is” end of life” registered, and I presume they would Fast Track but is that a guarantee that I would continue with funding? Many Thanks. Barry
Hi – would anyone know if this is in line with the National Framework (NF): when the assessors have finished the review they disappear out the back to discuss it. I thought they were supposed to be transparent and discuss it with you in the room.
Hello, can anyone help. My dad has end stage Parkinson’s Disease. He is being cared for in the community under social care. We are repeatly told that dad doesn’t qualify for NHS Continuing Healthcare (CHC). Even though he is wheelchair bound, peg fed, needs support feeding, washing dressing, etc. All these things that he cannot due are due to his illness. He also has behaviour problems brought on from the medication he is taking. He has dystonia, drop foot, a hand that won’t open properly. He takes a whole host of meds for Parkinson’s, Thyroid, B12 deficiency, sleeping tablets, anti depressants, etc, etc, etc. He is also on a specialist MCT diet that has been prescribed by a neurologist and a metabolic team. Surely all of these things that are prescribed and advised by the NHS should be seen as medical or health care need not social. Yet the CCG he is under keep saying that they do not recognise any of these as health care needs. I just don’t get how they can say this when dad is involved with so many NHS professionals and they prescribe him so much stuff and looking after him is a 24/7 job. Carers 4 times a day and my mum up all night long. Social service don’t support him in any way when it comes to applying for CHC. I am constantly arguing with his social worker. I have told her that it is illegal for social services to charge dad for NHS care because it isn’t free at the point of service. We have now just been refused another CHC assessment and I don’t know what to do next. My sister has provided so many letters and evidence from NHS professionals about all dads medical needs but these are all completely dismissed. Any advise is much appreciated.
It appears that the NHS does not have sole responsibility for all nursing care. Local authorities can provide nursing services under section 21 of the National Assistance Act 1948 & so long as those nursing services are capable of being properly classified as part of the social services responsibility. This is all a very grey area & one which assessors constantly hide behind.
Its illegal everything the NHS are doing,l am having my second CHC assessment in the next few weeks
I had a positive checklist (wait for it 2 years ago)but l
have a suggestion ,for some of you that’s worth trying,l have refused to pay towards my social care bill,wow the reaction,social servicesgot in touch with the NHS,and said l,was not paying my charges,as my needs are health needs,so two years after the checklist the DST is going ahead.
I know that even if l only score in one section of the DST the medication section,l should score a priority for unremitting pain, in an up to date letter sent to my GPfrom the consultant anesthetist who runs the pain clinic,he has stated he can do nothing more for my pain,as she needs both knee replacements bilateral shoulder surgery, and deformed feet surgery, caused by rheumatoid arthritis osteoarthritis arthritis osteoporosis and fibromyalgia. But we cannot operate as she has multiple comorbidities and is to sick for surgery. I am also in palliative care for heart failure, and in total l have thirty one,long term,illnesses which includes, bipolar insulin diabetic and double incontinence, with continues diarrhoea every day caused by some of my medications, l have a letter from my gastroenterologist stating that to my GP,and he told her to put me on,permanent diarrhoea medication two tablets every day, for the rest of my life.so you will agree l should be CHC funded,l am fighting hard this time around am a widow l lost my husband nearly,7 years ago,he was my full time carer from 1990,l am waiting to see if they will wangle out of the priory score l am entitled to.
Valerie
This complexity etc ,is not a decision making tool it is a guidance tool to help the MDT come to a sensible decision, they are not supposed to,use it mechanistically but they obviously hope you dont know this.
The best way l can explain this is to tell you to type in your computer Luke Clements resources, Luke Clements is a solicitor and he teaches health and social law,this is his specialised area look on his site for his video on continuing health care it’s about an hour long and it covers, the way the DST should be carried out,as well as his videos there is a large amount of information on his site that will help you well worth a visit.
My mother sadly passed away last November from her heart failure. We have taken her case for an independent review by the nhs england.. just want to get over my bereavement and love
On with my life but its never ending