At your wit's end with NHS Continuing Healthcare?

Frustrations and obstacles leave many at their wit’s end in NHS Continuing Healthcare assessments and appeals
Some options for you…
Even just a quick glance at the comments and questions on our blog reveals the huge number of obstacles and frustrations many families experience with the NHS Continuing Healthcare funding system.
It can be hard to know what to do when it seems as though you’ve exhausted all avenues to achieve justice in Continuing Healthcare for your relative.
If you’re finding that your local Clinical Commissioning Group (CCG) and/or NHS Continuing Healthcare team won’t listen to you, won’t reply to you, won’t abide by the Continuing Healthcare assessment guidelines and/or are ignoring the law (for example the Couglan case and the Care Act), you may find the suggestions below helpful.
The usefulness of each option will depend on which stage of the assessment and appeal process you’re at:
Write to your MP
Many people write to their local Member of Parliament (MP) about the maladministration in Continuing Healthcare. We hear mixed reports about the effectiveness of doing this, but it is one way to exert some pressure, and some families do find that it leads to a faster response from their Continuing Healthcare team and/or Clinical Commissioning Group (CCG).
Contact the press or media
It’s not everyone’s preferred option, but some families have shared their stories with local newspapers and local radio/TV. The resulting negative publicity for the local CCG can make a positive difference in individual Continuing Healthcare cases. Equally, you could approach some of the national current affairs programmes or ‘magazine’ style programmes in national radio and TV. If you do this, always be aware that you will generally have no control over what is actually broadcast or printed, but if the newspaper or media station is on your side and is perhaps looking to cover this as a wider issue anyway, it may be a good option.
Contact NHS England
If you’ve exhausted the local assessment and appeal process and the local CCG is still not handling your case properly, you can approach NHS England. This may be for an independent review or it may be to raise other concerns about Continuing Healthcare.
Alternatively, or in addition, write a letter of complaint to Simon Stevens and copy it to the press and/or other relevant organisations. Simon Stevens is Chief Executive of NHS England and is accountable to Parliament.
These are the correct stages of the local Continuing Healthcare assessment and appeal process.
Contact the Head of Adult Care at your local authority/council
The local authority/council has a legal duty to evaluate whether your relative’s care is beyond the local authority’s own legal remit. If it is, the NHS has responsibility for funding your care through NHS Continuing Healthcare. For this reason the local authority MUST be involved in the Continuing Healthcare assessment and appeal process. If a person’s care needs are beyond the local authority’s legal remit, and yet the person needing care is paying for their care, the local authority will be acting illegally because it will, effectively, have taken responsibility for that care.
If the local authority has been remiss in this legal duty in your Continuing Healthcare case, contact the local authority’s Head of Adult Care and make it clear that the local authority are potentially in an illegal position, as they haven’t adhered to the Care Act.
In addition, write to the leader of your local authority/council stating that they should be asking questions, because their tax payers are picking up the tab for those people rejected unlawfully for Continuing Healthcare by the CCG.
Make a complaint about specific individuals who have broken the law or failed to follow procedure
If relevant, make a formal complaint about specific social workers and/or CHC assessors. Remember that all those working in health and social care must follow their own professional codes of conduct. Here’s an example from the Nursing & Midwifery Council.
Contact the Local Government Ombudsman (social care only)
This is not strictly to do with NHS Continuing Healthcare, but it may be useful nevertheless for social care matters. If you have concerns or complaints about the way your social care is being charged, write to the Local Government Ombudsman (LGO) and outline your case. (Note: The LGO is not the same as the Health Service Ombudsman – see below.)
Contact the Parliamentary and Health Service Ombudsman
If you’ve already taken your Continuing Healthcare case to an Independent Review Panel at NHS England and you’re still unhappy with the outcome, write to the Parliamentary and Health Service Ombudsman (PHSO). We hear mixed reports about the PHSO service, but it is an option to consider.
Use a Continuing Healthcare adviser or solicitor
This is worth thinking about if you need to offload things onto someone else. There are, of course, costs to consider, but if you’re acting as power of attorney for your relative, the fees for advice could potentially come from your relative’s funds. Always double check this though, before you use funds for that purpose.
Should you use a solicitor in Continuing Healthcare cases?
How to choose a Continuing Healthcare advisor
Consider going to court
The potential legal costs involved in going to court understandably put many people off, but it may be appropriate in some cases.
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It’s useful to know what options other families may have used to prompt some response from local CCGs and Continuing Healthcare teams – to try to make progress with funding assessments and appeals.
If you have additional suggestions that might help other families – especially if they have made a positive difference to you – please share them here.
Hi
This latest article is excellent and lays out all the options available when you are not happy with how the CHC process is being dealt with and the actions of Health & Social Care professionals.
There is another very powerful option that professionals are always in fear of, and I would definitely add to this list.
Every Health & Social Care professionals belongs to a professional body and they all have code of ethics that dictates how they must practice to maintain their professional registration. They must keep accurate records, must treat people with respect and have good communication with them. The code of ethics will all state that they must keep their knowledge up to date and must comply with the law and policies.
As I know from my 20 years working in Social Care (last 4 as a manager) and since working as a CHC consultant, there are frequent and blatant breaches of code of ethics by many professionals, especially when it comes to CHC. I advise all my clients to submit complaints to the professional bodes of those involved.
If it is made known to professionals that you are aware of the code of ethics they must comply with and that you point out their failures it will give them a shock and may even get them to do their jobs correctly and in line with legislation.
A complaint to the professional body is another string to your bow and will empower you if you feel you have no control if professionals are playing fast and loose with applying the CHC process in line with the NF and legislation. A complaint to a professional body can proceed at any time and can be outside of a complaint to the CCG or LA and any appeal processes.
See Code of Ethics for Nurses and note the failures that may be occurring with regard to CHC: https://www.nmc.org.uk/globalassets/sitedocuments/standards/nmc-old-code-2008.pdf
See Code of ethics for Social Workers: http://www.hcpc-uk.org/assets/documents/10003B6EStandardsofconduct,performanceandethics.pdf
I sincerely believe that the option of making a complaint to the professionals professional body for a breach of their code of ethics is very powerful one. I also know for a fact that many Social Workers and CHC nurses read blogs on this website and will not be pleased with me for making you aware of your ability to put in danger their registration and the risk of being struck off and possibly losing their jobs. However I am frequently appalled at the actions of professionals involved in CHC who should have their practice investigated by their professional bodies.
Good luck.
Totally agree Bernie but..
Dont be surprised when the fraudsters close ranks after you complain.
Persuant to a very detailed complaint about the numerous ways in which our particlar CHC assessment either mis-applied or ignored totally parts of the ‘National Framework’ my wife and I were outrageously accused by
the CHC assessment leader of ‘elder abuse’ and called before the “Safeguarding Adults” team.
Needless to say the safeguarding team saw thru the assessors spurious accusations which were
plainly ridiculous and we were totally exhonerated. In short, apart from this our complaints were totally ignored and the Safeguarding Adults team, who agreed at the meeting to look into the possibility that the patients rights were being abused by the CHC assessors wouln’t answer our calls or reply to our messages.
Subsequent attempts to ‘blow the whistle’ on this scandal have resulted in a threatening letter from the NHS’s appointed solicitor. It seems thay have no qualms about using ours and our relatives money, fraudulently obtained, to gag us.
HI Sandra
I do come across this ridiculous response from CCG’s when there isn’t a POA.
Two areas to challenge them;
1. See what the Information Commissioners office states re ‘subject access requests’ (SAR) and reasonableness in this link https://ico.org.uk/media/for-organisations/documents/1065/subject-access-code-of-practice.pdf
Contact the ICO to discuss your case and get advice as they are acting unreasonably given they have shared information with you previously at meetings, emails and in letters.
2. Best Interest & Mental Capacity & NF.
Read para 48 & 52 of the NF and also go to page 58 & read PG6 also page 60 practice guidance notes and PG 8, PG 9.
Consideration of eligibility for CHC is a ‘welfare decision’ in the context of the Mental Capacity Act. (PG 7.2)
As such if you don’t have POA there is a legal requirement under the MCA for there to be a formal best interest meeting headed by an independent chair ( ask for their policy on best interest meetings) . The decision in question being (a) is it in the best interest of the applicant to allow her daughter to act as her ‘advocate’ to appeal the decision not to award CHC ?(b) to allow her daughter to have access to all relevant records as per the NF to assist in the CHC appeal process?
Ask for a BI meeting as quickly as possible as you only have 6 months to lodge an appeal once the CCG have given you written notice of the outcome of a CHC process. Also insist on copy of their BI policy and an independent chair. If they refuse to hold one then advise you will be making this a safeguarding matter and will submit a complaint to the CCG and on tot he Ombudsman as maladministration and that you will make a complaint to the Court of Protection.
Also ask that they comply with the Care Act ’14 and they make an urgent referral for a Care Act Advocate to assist you in the CHC process . See this link and particularly para’s 4.8 & 4.9.
I would ask in an email for confirmation that you are not able to act in your mothers best interest as her advocate in a CHC appeal. Send it to whoever has told you that they cant talk to you about a CHC appeal. I would be very surprised if they will make this statement in writing as they know they would be in breach of the NF and not complying the with the MCA.
You need to be robust and assertive with them or they will run rings around you.
Good luck.
Hi Sandra
sorry I forgot the link re the Care Act advocate … see para 4.8 & 4.9
https://www.england.nhs.uk/wp-content/uploads/2015/04/guide-hlth-socl-care-practnrs.pdf
Or one could employ an Independent Mental capacity Advocate…. Free via your local council. They have tremendous power when representing poorly cognitive or mentally ill patients. They will work with you if that is what you require. Seek those experienced in NHS CHC matters. Try this link for starters….. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/365629/making-decisions-opg606-1207.pdf Or type IMCA into your browser for your local advocacy organisation.
Paragraph about Independent Mental capacity Advocates. IMCA From post link above.
What is meant by ‘having nobody else who is willing and able to be consulted?’
The IMCA is a safeguard for those people who lack capacity, who
have no one else other than paid staff who ‘it would be appropriate
to consult’ (apart from adult protection cases where this criterion
does not apply). The safeguard is intended to apply to those people
who have no network of support, such as close family or friends,
who take an interest in their welfare.
MY TEXT….. IF THE AUTHORITIES DENY YOU THE RIGHT TO PARTICIPATE THEN THEY MAKE YOU FIT THIS CATEGORY. THEY ARE OF COURSE WRONG TO DO SO. HOWEVER, IF YOU ARE NOT EXPERT ENOUGH TO REPRESENT SOMEONE THEN IT SEEMS ENTIRELY CORRECT TO UTILISE THIS SERVICE……
Decision-makers in the NHS and local authorities need to determine
if there are family or friends who are willing and able to be consulted
about the proposed decision. If it is not possible, practical and
appropriate to consult anyone, an IMCA should be instructed.
The person who lacks capacity may have friends or family but there
may be reasons why the decision-maker feels it is not practical or
appropriate to consult with them.
MY TEXT…. IF THE DECISION MAKER WILL NOT ALLOW YOU TO CONSULT THEN THEY MUST INVOLVE AN IMCA ……. THEN YOU CAN INFLUENCE THE IMCA WITH YOUR KNOWLEDGE OF THE PATIENT AND THE ASSESSMENTS.
After weeks of silence a call to meet matron; after our request to discuss concerns around her healthcare on arrival matron was flanked with mum in law’s social worker, consultant and discharge nurses. The social worker literally cowered in the corner scribbling notes; apparently she had done a capacity assessment a few days ago and MIL has capacity to make all her own decisions. The consultant present (initially would only say he wasn’t going to answer any questions) was the same one who gave MIL a dementia diagnosis a few weeks ago. When visiting this am she was ordering nurses out of the room and complaining about being bitten by giant spiders. The NHS staff are refusing to do a Fast Track CHC on the grounds that she is not in the last 12 weeks of life (don’t care what the framework says local policy is ….) Two weeks of silence over this!
They won’t countenance another CHC (the first is being appealed but we all know how that will drag on) despite the fact she now has a dementia diagnosis, pressure sores and a diagnosis of a ruptured bowel secondary to diverticulitis which could recur at any time, none of which were known / taken account of previously.
Then the insults started: we were depriving her of her liberty, (if she had the capacity she had before admission she would have picked up the phone and called a cab and discharged herself), she was at risk of infection in hospital and would be safer in a nursing home, finally the threat to evict her followed by the subtle twist “well we have sent home far worse patients with just 4x 15min care a day”.
Rest assured, as in the PPI scandal, the truth will out eventually.
I am confident that the impunity of those accepting the “blood money”
stolen from the helpless will evaporate.
They and we know who they are.
We are in the middle of an appeal after our mother was found ‘ineligible’ at her last DST, and the system seems to have changed greatly since we last went through this three years ago. We now have to initially have a Local Resolution meeting with a member of the CHC team. We can no longer represent our mother ourselves at a Panel (in fact the suggestion seems to be that now there is no Panel in our area!) We’ve been told that this lady will interpret our appeal, look over the evidence (again), and decide if there is a case for an appeal (which means she has to go back to her office and tell her colleague that her DST was wrong – I can’t see that happening especially as she’s already told me how good this colleague is!) She may also suggest that another assessment is completed (which in this instance means they save money as we wouldn’t be able to claim back the money our mother is currently having to spend if we accept this option). Or she may decide we have no case, which means we then go to NHS England – who do meet as a panel and who do invite family representatives. Three years ago we lodged an appeal, were invited to attend a Panel meeting, discussed our case and won the appeal!! Does anyone have experience of this new arrangement to the appeal system?
Our other big problem is getting the correct evidence from the nursing home. They are excellent and have tried to be helpful, but even the CEO doesn’t appear to really understand the assessment process, nor appreciate the evidence that is required for the specific sections of a DST. While the care staff are being asked to provide more and more information (three assessments in the last year; one ran out of time, one appears not to be recorded anywhere, one completed ….. and now we hear that the evidence from the last DST whose decision we are appealing has all been destroyed and the nursing home have been asked to gather all the paper evidence again….. using up time that could be far better used actually caring for people) the staff don’t really understand the questions that come from a DST form nor the language required; complexity, intensity etc. Any helpful comments based upon experience?
And so it continues. On the eve of the first stage of appeal having received, after a lot of obstruction, MiL’s case notes we find we have been reported to safeguarding for not acting in Mil best interests by “making her stay in hospital”. Psychological bullying tactics especially as we have young children! Waiting for the knock at the door as we speak.
1. We have been asking for a discharge plan all “they” offer is pay for care home.
2 Given MiL’s multiple health problems not really sure hospital is such a terrible place. But hey. Consultant said best place for her with dementia is in her own home. We said that what we want make arrangements to do it safely 5 weeks ago.
3.Given she has mental capacity (as deemed by social worker (SW) who didn’t even know by what authority she enabled to make such a decision. Same one that had no knowledge of Coulghan or the LA legal limit.) no reason they couldn’t have dealt with her directly to make arrangements to ship her out. Given she has dementia, severe communication problems, etc asking her to sign a contract for 6 figure sum to be paid to a care home would IMHO be legally suspect at best,…. but social worker deems her to have capacity…..
SW claimed MiL consistently at 3 meetings told her she wanted 24 hour care (they say she means nursing care). Data Protection Act (DPA) released documents show evidence for only 2 visits – the first was abandoned as they were unable to understand her!
4 At an ambush discharge meeting 6-2 (would have been 6-1 fortunately I had some time off work to accompany my wife), we had gone in to speak to matron re failings in MiL’s care. We were threatened with MiL being evicted saying we’ve sent home patients with even more severe need than her… despite the fact we thinks its not safe.
5 Social worker 5 weeks ago was asked to get an answer to our proposal that a care package with overnight/24hr care was instituted at meeting – she said it was impossible and no one in local authority (LA) care got this; we only do max of 4x 15 min visits. Asked why – didn’t know so went off to find out; one Freedom of Information (FOI) request later: LA does indeed do this care: 53 folk get more than 4 visits a day, 18 get overnight care. (Interesting to wonder which of these the council is illegally funding, breaching its legal limit because it fails to challenge NHS.)
6 Will update you after tomorrow’s meeting if I haven’t been arrested.
Can someone please help. My husband has MS. He is in a wheelchair, needs to be hoisted, registered blind, deaf in one ear. Totally dependent, he cannot feed himself or do anything for himself. He was awarded CHC over a year ago. Given a Personal Health Budget (PHB) in September last year. No care plan has been written. We were guided into a company managing his PHB. It took them 6 months to employ 2 personal assistants. One was totally not suitable, the other one disappeared last week leaving us alone. The emergency plan is non existent. If I fall ill or cannot look after my husband for some reason what will happen? I am disabled myself, however, because I do not look disabled at first sight, no notice is taken and I am left alone to manage. I need some guidance on what I can do. I have complained several times but nothing is done. When I asked about his care plan I was told,”We are having difficulty finding a nurse who is willing to compete it”. We have Community Matrons who look after people with long term health conditions but no one will refer him to them. We are at our wits end.
I have just received notification that my Mum does not qualify for Continuing Health Care. The decision is set out entirely against the Nature, Intensity, Complexity and Unpredictability. There is no mention of the 12 domains nor have I received any documents setting this out.
The assessment took place in hospital in May. I attended but did not have any of the information from your good site to help me. Nobody else’s fault in that I also did not have my reading glasses so was reliant on listening and understanding what was being said and determined. In attendance were a young Social Worker who does not know my Mum and the Ward Manager reading from notes. Their judgement was that Mum did not meet the criteria. To this day I have not received a report of the findings within the 12 domains. Having reviewed the ‘tool’ my non-objective view is that she is Severe in 3 domains, High in 3, Moderate in 3 and Low in 2.
In the meantime my Mum was discharged to a nursing home. On transfer the home were made aware that Mum had been having fits in hospital (I was not made aware of this while visiting for all but 5 days in 12 weeks). The home also became aware of appalling soreness of the bottom which requires 1/2 hourly repositioning. My mum is 79 has severe dementia through alzheimer’s disease (diagnosed more than 10 yeas ago), cannot weight bear nor move herself in bed. She cannot move her arms to any extent that allow her to feed, drink, medicate or even scratch an itch for herself. She is registered blind and has had poor hearing from the age of 5 (2 hearing aids). She has no long or short term memory and can no longer communicate. Before discharge from hospital, her consultant advised that she might have a couple of months before her organs fail her fatally.
In fairness, the nursing home have contacted the CHC and asked them to visit to reassess in light of her condition, which happened last week. I have not heard the result of this revisit but in the meantime I have received the decision as described above.
I am despairing and am shaking my head as I type. The care costs are around £1000 per week less a ‘nursing payment’ of around £120 and is a matter of weeks from forcing the sale of her flat.
Is there anything I can do?
I’d like to add that I have been advised by CGG that my Mum will be reassessed for CHC, although this “may take a couple of months”.
I was also advised that minutes of assessment meetings are only sent if requested, which I didn’t know.
Thanks. She has deteriorated since I last posted and end of life care has been initiated.
She is very frail and cannot take food, fluid or medication.
Thanks Richard,
The consultant was the Doctor overseeing her in the hospital. Mum has now been under the care of a nursing home for about 5 weeks.
That said, mum has taken a severe turn for the worse and an ‘end of life’ care package is in place. The priest was called to see her today.
The Parliamentary & Health Service Ombudsman’s (PHSO) website says that if the PHSO decides to investigate a case any decision they make is “final.”
I know that decisions of the PHSO can be the subject of a judicial review.
However, what is not clear to me is if someone decides to appeal a NHSCHC funding decision via the PHSO route, and the PHSO agrees with the decison of the CCG, is it correct that the courts cannot subsequently consider whether the CCG’s decision was lawful and correct on the facts?
In other words, once you have had an independent review of the CCG’s decision, must an applicant for NHSCHC decide whether to appeal to the PHSO, or decide whether to ask a judge to consider whether or not the decision was correct in law and on the facts?
Any clarification would be very welcome.
Thank you.
I requested a doctor to attend the DST assessment. When I arrived he/she was not there, and I was told that they do not have to attend. I approached my mothers practice to see if they were approached and they had no record. Can they do that?
(From Mary)
My severely demented mother had her MDT assessment using the DST a couple of weeks ago at her care home. I was informed by phone some weeks before that she would be having an assessment by a nurse followed by a social worker’s assessment a few days later. It was only after receiving a letter from the NHS Continuing Healthcare team this week that revealed that the “assessment by the social worker” was in fact the MDT assessment at which a nurse was also present.
I spoke to the lead nurse by phone stating that I was not informed that this was the MDT assessment using the DST and asked why I had not been informed by letter; she told me that their policy was to phone the patient’s relative. Obviously this conveniently leaves no record. The MDT assessment is simply wrong in places with a number of half truths or straight lies.
My point is: is the MDT assessment valid as I was not given the the opportunity of attending, or will I need to go through the appeals process? I don’t expect that there is much chance of overturning the decision but at least would like to force the local CHC to document matters in writing so that other families are given proper information.
Hi Mary.
They have failed to comply with the National Framework (NF) and also the Care Act ’14 by excluding you from the MDT assessment of your mothers health and social care needs.
See the Decision Support Tool (DST) document itself….page 8 para 4 and 5 The multidisciplinary assessment that informs completion of the DST should be carried out with the knowledge and consent of the individual, and the individual should be given a full opportunity to participate in the assessment. The individual should be given the opportunity to be supported or represented by a carer, family member, friend or advocate if they so wish. The assessment process should draw on those who have direct knowledge of the individual and their needs.
Also as there is a legal requirement for Social Services to carry out an assessment under the Care Act 2014, the social worker (SW) has – in her statutory duty – failed by excluding you from the assessment. See this link https://www.gov.uk/guidance/care-and-support-statutory-guidance/first-contact-and-identifying-needs and para 6.9
6.9 The purpose of an assessment is to identify the person’s needs and how these impact on their wellbeing, and the outcomes that the person wishes to achieve in their day-to-day life. The assessment will support the determination of whether needs are eligible for care and support from the local authority, and understanding how the provision of care and support may assist the adult in achieving their desired outcomes. An assessment must be person-centred, involving the individual and any carer that the adult has, or any other person they might want involved. An adult with care needs could for example ask for their GP or a district nurse to be contacted to provide information relevant to their needs.
You have the right to lodge an appeal via the CHC process. I also feel you have the right to lodge a formal complaint against both the CHC nurse and the SW for breaches of the NF and the Care Act, they have a code of practice as part of their professional standards and both have breached this. There was a lack of candour and transparency by both the SW and CHC nurse this is a breach of CQC regs see http://www.cqc.org.uk/content/regulation-20-duty-candour.
The NHS now has standards of transparency and candour following the Francis Enquiry into the Staffs Trust, they have clearly breached this as well. See https://www.gov.uk/government/consultations/statutory-duty-of-candour-for-health-and-adult-social-care-providers
You could notify the CCG CHC co-ordinator that you feel that by excluding you from the MDT in breach of the NF and Care Act ’14 that this invalidates the CHC assessment process and that you want another MDT CHC assessment and a another MDT assessment of your mothers health and social care needs (with you being present) before a DST is completed. You could also ask that you want different professionals involved as you don’t have confidence in them.
good luck.
Hi Bernie,
Just found this thread and wanted to ask a question re the Continuing Healthcare (CHC) process. A Community Mental Health Team member (CMHT), a Community Psychiatric Nurse (CPN), gave me a checklist assessment to complete as part of a needs assessment which I had requested, reminding the CMHT of the legal requirements of the Care Act. The CPN had not completed one before and he simply gave it to me to mark the descriptors I felt best fitted my father. He then did nothing with it and went on annual leave. A telephone call to the team got the response that nothing could happen until he returned – no body else was dealing with it. I emailed to ask the checklist score and whether it had been forwarded to the CCG. He replied by email with a response that was cut and pasted in so may have been worded by someone else – that the checklist was not being sent to the CCG as my father had recently been prescribed antipsychotic medication and the CCG would want to see a further assessment when my father was at his “optimum” (his use of inverted commas) after taking the drug for 6-8 weeks. He said a clinical decision would decide when the checklist needed redoing. Surely this cannot be the case. What is the legal situation? I feel this is an attempt to stop a full assessment. The drug will not make a dramatic difference according to the doctor who prescribed it and he only did so because my sister (my father’s main carer) was at her wits end with his unmanageable behaviour. If anything his behaviour has worsened. I need to know how to respond, how do I insist the checklist goes to the CCG and a full assessment takes place? I would welcome your input. Thanks
Meggie
Chris-G,
Thank you for your reply. I was devastated when I received the email saying no plans to refer to CCG and they would wait 8 weeks before making a clinical decision about whether another checklist needed to be done at all.
I plan to respond and your comment that” a well managed need is still a need” is very helpful – I had forgotton this. I also plan to point out that my father still scores As in two other domains so should still be referred anyway.
The process has been so distressing and lonely and only people in the same situation seem to have any idea of the nonsense that is involved or of the lack of compassion and ignorance exhibited by NHS staff who in our experience seem to think that their jobs are to do anything except actually look after very sick people.
I last commented about 4 months ago. It was about my severely disabled husband and Continuing Healthcare (CHC). He was awarded CHC in May 2015 and given a Personal Health Budget in September 2015. We are no further forward than we were before CHC. No care plan, no emergency care plan, basically no care. We had a meeting with our CCG in August to discuss our complaints and we were told everything would be resolved by 8 weeks. Guess what, that was 8 weeks ago tomorrow and nothing has happened. The whole way that CHC is being implemented needs looking at urgently.
I have done all that. NHS England haven’t been bothered. The Ombudsman is investigating. Our MP is awaiting the outcome of our complaints to the CCG. The CCG keeps investigating our complaints and whilst they do that they’re seen to be doing something. And we carry on managing because no one seems to care.
Thanks Chris, we have a District Nurse visiting today and someone from a care company tomorrow. All this is because I began tweeting about the CCG’s total incompetence. If nothing comes out of this I will contact social services.
Really need advice. After reading Care To Be Different I followed advice on Bernie Crean’s article and asked for a needs assessment as a way of getting a Checklist done. Since then the Community Mental Health Team (CMHT) will not leave us alone. Dad passed the Checklist but they did not submit it to the CCG so it was a waste of time and I have given up on CHC as the process has made me ill. However, now we have decided that the only option is to continue to care for dad at home as a family with paid private care to help we can’t get rid of the nurse who did the needs assessment and his visits have just become something else to fit into a very busy and stressful life particularly as he continually reminds dad he has Alzheimer’s. This is worrying dad and dad is now talking constantly about having Alzheimer’s and dying. Two neighbours with Alzheimer’s ended up in care homes and later died and dad is aware of this. We tend to not discuss it with dad and he is happier thinking he is doing really well for 91 and is just a bit muddled and forgetful at times. I emailed to cancel a meeting for next week but the nurse has replied to say he has to come and see dad to see what other services dad wants from him. Dad will agree to anything in his current mental state so if nurse says do you want me to come again dad will say yes and we will have another day disrupted. Can we refuse further involvement? It isn’t helping and is simply an added stress particularly as the nurse implied in a letter that they needed to be sure some of dad’s delusions were delusions and not real, i.e. that we might be after his money. Please help.
Can you help. My mother had a stroke in 2006. On her discharge from hospital I was told she needed full time nursing care and to look for a nursing home, which she went into on leaving hospital. Her savings and the sale of her house were used to pay for care. I have been turned down for funding which I am appealing against. My mother had dementia was blind, deaf, doubly incontinent with mobility issues and skin problems. The NHS care team would not look at the last two years of her life as no assessment had been done. Is this correct?
Posted Pamsday and https://www.youtube.com/embed/YaMXowPWxis. [Ed: This is from the very informative website http://www.nhscare.info] for our local CCG to compare MIL’s care needs firectly with Pamela Coughlan their replies or lack of are below:
Thank you for your messages relating to Ms. Coughlan’s case. I have passed these to our chief executive, chair and director of commissioning for their information.
I will seek their response to why this case is different to Mrs Hs.
Best wishes
L
Dear
In response to your query. We are familiar with the Coughlan judgement as the principle of “primary health need” is now embodied in the National Framework for NHS Continuing Healthcare, first published in 1997. In Mrs H’s case, an assessment has been carried out in accordance with this framework, the outcome being that Mrs H does not have a primary need for healthcare and does not meet the criteria for NHS Continuing Healthcare. This can, of course, be challenged through an appeal process, firstly at local level and then through NHS England.
Best wishes, L
This is from the LA;
surely if the assessed need is 24h nursing care that must be a primary health need???
Dear Sirs,
Further to our telephone conversation, conducted on a without prejudice basis on both sides, with a view to exploring a resolution to the issues in this case, my client remains of the view that the position of the local authority is that it cannot agree to meet certain heads of assessed need, and not others, on the basis that by those heads of need not being met, the health and safety of DH will be placed at real and immediate risk. The assessed need is for nursing care 24 hours. The reasons remain those set out in previous correspondence, not part of this “without prejudice” communication.
Yours Faithfully.
Name: x
Job Title: Principal Solicitor
I I am getting nowhere and would appreciate any advice. A positive Checklist was not referred because the assessor – a Community Psychiatric Nurse (CPN) – noted in the Rationale for Decision section that due to a medication change a second Checklist would be needed when my father was at his “optimum” (his use of inverted commas, not mine). I sent a copy of this Checklist to the CCG and requested a full assessment as it did indicate potential eligibility. They have written back: “The CCG can confirm that at the time of the Checklist the assessor clearly indicates in the “Rationale for decision” domain that your father was not at his optimum to assess under the Continuing Healthcare Framework as he was receiving services from through the door NHS services at this time. Therefore your father is deemed “not medically fit/or optimised” under the Continuing Healthcare Framework. Once these interventions have been completed a new Checklist can then be submitted to us for screening. This has been communicated to the assessor.”
I can find no reference anywhere in the framework, Checklist guidance etc. any use of this phrase optimum or optimised.
I feel this is obstruction/delay but am a loss how to respond.
Given that two hospitals and a social worker all failed to carry out a Checklist at the beginning of this year, can I ask or insist the CCG to go straight to a full assessment?
It is hard to have any faith that anything will work as the letter from the CCG (which has an unreadable signature) is from the CCG Business Support Team – Continuing Care. What on earth has my father’s health got to do with Business Support and what do business support know about any aspect of physical or mental health care?
Thanks Richard. I followed your suggestion and wrote not just to the CCG to request a full assessment but to the Chair and CEO to complain about maladministration etc. So far the only response has been a dismissive letter from the governance team on behalf of the CEO. It claims all staff are appropriately trained in continuing healthcare and that as my father is under the care of the Community Mental Health Team (CMHT) I should approach them if I need further help. It goes on to say a second Checklist has to be carried out and this is part of the Framework because people should only be assessed when their needs on discharge are clear and when they are fully medically fit. They repeat the word optimum claiming to assess people when they are very ill and may get better would lead to an inappropriate use of NHS resources.
I will respond but it is clearly just a game to them, avoiding Checklists, manipulating Checklist results, delaying again and again and trying to confuse and misinform families at every opportunity. My father’s health conditions are all incurable – he can only deteriorate not improve, he was discharged twice from hospital without assessment, 12 months ago in January 2016 and again in April 2016. How long do they think the NHS should wait for a 91 year old to stabilise, reach optimum health, get fit etc? Waiting for someone to be stable who has Alzheimers is a joke – my father’s condition is unpredictable so there will never be a time when he can be considered stable and his condition unchanging so they will never assess him. He will be stable when he is finally dead.
I feel now that it does not matter what is wrong with my father or how well I understand the rules of Continuing Healthcare. He would qualify if the rules were fairly applied (as would so many others) but in his case it is not a case of being wrongly assessed – if that happened there is a right to appeal – it is simply that the CCG and paid NHS employees are conspiring to ensure no assessment will ever take place. Therefore there is no healthcare, no funding and a few emails from poorly informed staff is all it takes to save the CCG huge amounts of money.
It does not matter whether a CCG is Coughlan compliant or follows the framework. If a CCG simply refuses to obey the law (however crazy the law is) what can any patient or family do? It is a year since my father’s health suddenly deteriorated and he reached the stage of needing 24 hour care and it is clear the National Health service has no intention of fulfilling it’s obligations.
The saga goes on having been “invited” to hospital to be present when mother in law (mil) got served with eviction papers on arrival (following an exchange of emails with the new CEO and the local authority (LA)). The eviction papers turned out to be just a “threatening ” letter to paraphrase Peggy Mitchell “get out of ma hospital….”
One interesting point was the new tactic as we have pointed out evicting is pointless as (having capacity to do so) she has declined a nursing home the LA refuse any services to mil at home leaving the Hosp with the problem that even with a eviction order what you going to do….. well it now appears that a place of safety under the Mental Health Act section 136 is the plan?
Anyone been here before? all advice welcome?
Hi,
Due to a number of strokes my mother has lost the use of her limbs except her right arm and is unable to event re-position herself in bed. She has just been assessed using the checklist and under the mobility section they marked her down as “B”, however reading the descriptions I would suggest she is an “A”. Is there a more detailed description of these criteria?