The constant need to do email after email every single day with the NHS Discharge Team and Social Services and the ongoing confrontation in the aftermath of our failed application for CHC is really taking its toll. Been meaning to post on here for ages but, truthfully, I just haven’t had the energy to do so. I have been keeping an eye on things though and, as ever, keeping everything crossed for all of us going through or caring for someone with this horrible condition. Following on from the CHC, the assessment is now going through peer review and, assuming that the process will be assessed as having been correct (from our point of view, legally, it really wasn’t) it will then go to appeal at which point I think we’re going to have to call in some proper legal advice. Whilst all this is going on, we’re having issues with social services. A mental capacity assessment was carried out prior to the CHC decision meeting where Mum was deemed as lacking the mental capacity to engage in the ‘CHC decision process or care planning’. As such, as a family we have taken responsibility for finding a suitable home. Our preferred choice (small, comfortable and only just over a mile from my 80 year old father’s home and whilst expensive not quite in the eye-watering levels other nursing homes in Cardiff appear to be) no longer has an available room (it did when we first visited them) has said that Mum is top of their list. We have visited three other homes - one won’t take Mum because of their perception of her needs, one is stupidly expensive and the other we’ve had to rule out because I think Mum would feel very uncomfortable there. Despite the fact that we have LPAs for Mum’s health and finances, social services took it upon themselves to remove Mum from hospital last week to visit a home almost 10 miles away from my father because, contrary to the findings of the mental capacity assessment, their well-being assessment has deemed Mum as being able to choose and, apparently, able to act as decision-maker in finding a home. My stomach is churning just writing this. Like many PSP sufferers Mum sometimes understands what is being said to her, at others there appears to be no comprehension. Her level of need in terms of communication is deemed as ‘high’ by the family and her consultant (not, however by a newly qualified SLT who saw Mum for 10 minutes before the CHC assessment meeting!). When we have tried to have a conversation about finding a home she seems to indicate that she wants us to do this for her and when we asked about the visit to the home she responded with an emphatic ‘no’ that she didn’t. The Discharge Support Officer who took her however claims that she enjoyed the visit. The situation is further complicated by the fact that none of the family was consulted about this visit, I am not aware that any risk assessment was carried out before removing Mum from hospital, the person who took her attended her graduation ceremony yesterday so has limited experience of working with vulnerable people let alone those with PSP (Mum falls regularly and fails to adhere to instructions telling her not to move) and the whole of the MDT now appears to have closed ranks and will not address the numerous messages I’ve sent asking why the mental capacity assessment says that Mum cannot engage in the care planning process yet social services say that she can. I understand that the matter has been escalated up the ranks at social services but I’ve not heard back from them for 48 hours or had an acknowledgement from them as to how it’s being dealt with or when I’m likely to hear back. At my wit’s end - no PALS at Mum’s hospital from which to get any advice, no support from the NHS Discharge Team and no response whatsoever to my repeated requests as to why Mum can be deemed not have mental capacity by one party but deemed to have it by another. Sorry, yet again a long rambling post but if anyone has any advice or pointers they’d be gratefully received.
CHC Mental Capacity Assessment vs Social S... - PSP Association
CHC Mental Capacity Assessment vs Social Services Well-being Assessment - Help!
Hello WRD
Gosh, you really do have it full on! However the exhausting and frustrating situation you describe is akin to what many folk here have also been through. It's hard, but you seem to be on top of it.
I expect I will tell you things you already know here. I'm just covering the bases.
The Capacity Act provides that every decision your mother has to make is subject to her capacity to make that decision. It's not global. That is she has been found to lack capacity to make decisions only about Care Planning, nothing else. Any decisions in other areas would have to be subject to another Capacity test for that.
You are an Attorney for Health and Welfare. Your mother has failed to meet the capacity test for engagement in Care Planning. End of story. There has been a formal test of capacity under the Act. Legal papers have been signed and only a Court can reverse that decision. The Social Services were acting unlawfully. You should now be consulted for everything in this area. And, you are her decision maker - by law.
The CCG are probably being silent on this because they don't want to say that Soc. Serv. have behaved unlawfully.
I would write to the Hospital Consultant and the Social Services as well as the CCG formally pointing to the decision regarding your mothers capacity re. Care Planning and telling them as the Attorney you require them to involve you in all processes requiring your mother to make decisions as well as all changes to her care plan. With regard to Social Services you might also want to make this letter a formal complaint which will formally force them to review what has happened and to respond to you with a reply. It's a good way of ensuring that there isn't a fudge and that there is no repeat.
A note on capacity and PSP. Folk with PSP often pass the part where they show they can retain the information in order to make a decision. However they are more likely to fail the crucial part of the test of being able to weigh that information against alternatives. This latter part is difficult to assess if the person being tested has poor communication. It can really only be tested if the person contradicts themselves, or is clearly confused. People are allowed to make what is called an 'unwise' decision. Such as, in this case, choosing a wholly inappropriate placement. As for the SLT (I don't know what that is) They cannot do a capacity test on their own. They need a Doctor to assess and give an opinion and then they need to do a formal test themselves. Was that done?
As for the CHC peer review. My eyes are rolling upwards! The Guidelines state that when the assessor has completed their evidence they present it to a funding body and that body cannot overturn the decision of the assessor. However they can request more evidence and even point out short comings in the assessment. Read 'hint that the scoring was off'. Peer reviews are probably technically unlawful. Though an assessor can seek others opinions should they see fit.
The NHS Discharge Team will be under huge pressure to clear the bed. Talk to them face to face. Tell them you have found a placement and that it is only the CHC funding holding things up. They may well turn their energies toward the CCG in your favour.
Adding: Part of the CHC assessment requires a Social Worker to make a decision about whether the care falls within the Social Services 'Legal Limit'. This forms the dividing line between Soc. Serv. and the NHS for responsibility to provide care and funding. If the Social Services state that the care is outwith their legal limit then the CCG have to pick up the care and funding. They can do as many assessment as they want, but they still have that legal duty.
Jumping forward. It might be that the home you want your Mum to be in is above what the CHC are prepared to pay. Legally if CHC is awarded they have to pay all costs. However they often say that they won't fund an expensive home as they can find an entirely suitable home for less. They will have an unpublished maximum. I asked my CCG and they told me what it was. In these situations expensive homes charge the maximum to the CCG, but say that there are extras for leisure activities and other such. You then pay the extra. It just squeaks through a hole in the law, but it can be to your advantage in terms of getting a better home.
It sounds like your doing a superb job. Keep writing! I harassed our CCG to the ends of the planet. We got there in the end.
Best to you
Kevin
Hi Kevin. I have an appeal date for Nigel's appeal early August. I am not feeling as brave now that they have sent me paperwork. They are seeming to insinuate that the assessor meeting at home was the MDT meeting although no social worker was present. I thought the MDT meeting was the one where they make the assessment. Upset me on Monday so will have to read it again when I think I can cope with it but will have to be this week. Love Alison
Hi Allison
My heart goes out to you. I've been there and got the bruises.
I was quite surprised just how small I felt when faced with the 'authorities and their poor communication just went to enhance the feelings of powerlessness.
When you feel ready don't hesitate to PM me if you want comments.
Have you read anything on making an appeal? Most advisable. I can send you links if you would like.
Yes, if no social worker was present it was an unlawful DST. The whole reason for the Social Worker being there is to hear the evidence first hand and to make that crucial decision about whether not the care is within their legal limit. In our county they do the assessments separately. That is unlawful.
Did Soc. Serv. do an assessment. You have a right to see it and also to ask about their decision re. the legal limit.
Wishing you the best on this. Such a damned struggle and so much hangs on it.
Warmly
Kevin
xxx
Thanks Kevin. 5 weeks today since Nigel died and I am not feeling like facing paperwork but have decided that I will go through it on Saturday afternoon and then treat myself to an Indian take away. Did not even want to garden this morning - not me. I would be grateful for the links but I have already submitted my letter. Two of my evidence they sent back as being out of the considered time frame but as one was SALT and the other from our neurologist both of whom we had to wait and see and who were both discussing the past and well as the future I am going to question that in writing before hand. Love AliBee
Hi Alison
5 weeks is so recent. I'm not surprised that you are doing little gardening. My heart goes out to you.
Here are some links, they overlap a lot.
caretobedifferent.co.uk/nhs...
continuing-healthcare.co.uk....
The links will take you forward too.
Warmly
Kevin
xx
Hi Kevin - thanks so much for your informed response and, sadly, I know only too well that this is a common experience for far too many people.
I had an idea of some of what you've stated on here but you've provided some pointers that have been really useful.
I have this afternoon written to the Discharge Liaison Manager who is directly involved with the Health Board (Welsh equivalent to CCG) and advised them that as Attorneys, the family wishes to be involved in all processes regarding my mother's care planning. I have also requested confirmation of receipt of my latest email to Social Services and put them on notice that we will be making a formal complaint. (I feel a lot more confident in typing this here than the thought of actually going through the process!) That all said and done, my worry is that our situation isn't very clear cut. We have an assessment attached to the DST decision that states Mum 'lacks the capacity to make a decision about proposed eligibility for CHC and care planning' but another attached to the Well-Being test carried out by social services stating that she has capacity for finding a home. We didn't act on this earlier because they will not forward any of these assessments electronically so the Well-Being Assessment was hidden in a load of documentation relating to the CHC Assessment meeting. I just don't get it ... how can Mum have capacity for finding a home but not care planning? Surely, care planning covers finding a home? If the Well-Being assessment does take precedence over the other capacity assessment then I have grave concerns about how Mum will be able to cope with this. On a good day she may be able to say if she liked a home but she often says 'yes' when she means 'no' and vice versa. She also struggles with place and time so the answers she gives often don't correlate with the current conversation. There is no way she has the cognition or communication skills to weigh one home up against another and she just wouldn't be able to consider things like value for money, whether it would offer her what she wants, would staffing cover her needs etc, etc. If they say that she can do all this there's a part of me that wants to let them sort it all out directly with her including analysis of her assets and payment of any home costs. I wonder how far they'd get - rolls eyes to heaven!
Apparently the peer review is part of Cardiff and Vale Health Board's protocol to Challenges to an Eligibility Decision. I share your despair but I'm working on the basis that, if nothing else, it may give us a better framework on which to plan our appeal.
The discharge team is aware that we found a suitable home at a time when a room was available. They are also aware that we were waiting for the outcome of the CHC Assessment before confirming that we wanted it. Conversely it is (substantially) cheaper than some of the homes that are on their latest list of those providing CHC - go figure! Anyway, the room has now gone but we are apparently top of the list and the matron there is telling us to hold firm and she'll contact us as soon as a room becomes available. Matters are further complicated by the fact that the list of suitable and available nursing homes seems to change on a weekly basis and doesn't correlate with what's actually available so the home they took Mum to last week was listed as not being available and not having CHC beds in our last updated list. The fact that I live three and a half hours away (although I'm trying to get down to Cardiff every other week) is the reason behind email correspondence rather than face to face meetings. The Assessment did give us nursing funding and we will get Attendance Allowance but this will only add up to about £250 a week but when you consider that the home they took Mum to last week was £1500 a week, it feels like a small drop in the ocean.
Anyway, I'm rambling yet again. I will keep at it although I'm really starting to feel out of my depth. Thanks so much for your input - it really is appreciated- and if you do have any further thoughts, give me a shout.
Hope things ticking along as well as they can be your end.
WRD
Hi WRD
So glad there was something helpful for you there.
The question is what actual capacity tests have been done? A capacity test is a stringent process carried out under the Capacity Act. It has its own paperwork which records the 'Test' and the reasoning for the decision. A doctor and a social worker are both required for the test. (There are exceptions for minor decisions about things like lunch and breakfast. They don't pertain here. Removing someone's ability to make decisions is a grave thing. Hence the formal legal framework. A decision cannot be made add hock, or on the hoof during something like an assessment.
There is Social Care from the Social Services which is means tested but only based on your mothers income. Her home can be taken into account but not if owned by someone else or if there are certain types of relatives living there. I expect you know this.
I would chase the Social Services about their assessment of Capacity.
It sounds like you are putting up a sterling fight. Hang on in there!
Do come back even for small queries... the whole thing generally get's made into a fog by authorities.
Here? Well we are at a later stage, more heart rending than anything else.
Wishing you well, the struggle can be exhausting.
Kevin
Hi Kevin,
For those new to all this the above correspondence would be more informative if the meaning if these abbreviations is explained at least once:-
CHC, MTD, PALS, CCG, SLT, DST
I try to use at least one entry in full before switching to acronyms. Sorry if I failed.
CHC - Continuing Health Care - AKA NHS funding - not means tested.
MTD - no idea - did I use that?
PALS - The NHS complaints resolution service - Can be a very effective route - Not available for Continuing Health Care
CCG - Clinical Commissioning Group - Each NHS area has one of these. They deal with all purchases of services and budgets in their area. They also have a sub team - the CHC team - who deal with CHC.
SLT - I didn't use that term - it might of been a typo by the poster.
DST - Decision Support Tool - this is the tool used to score 'needs' in order to decide whether someone is eligeable for CHC. Essential reading for anyone applying for CHC.
I shall try to do better.
Adding
MDT - Multi Disciplinary Team - Often involves NHS and Soc. Serv with a mix of professions. I is a method of getting closer collaboration accross different skill areas.
So glad you brought up the type of capacity test, thought I was going mad!
It looks like we have one form that covers ‘Mental Capacity for Patients to Consent to Assessment Process’ and another to assess their capacity to choose a home, both of which I would have thought are weighty decisions. Mum has been deemed not to have capacity for the former but to have it for the latter, despite the fact that the last section of the Capacity to Consent to Assessment Process clearly states that Mum ‘lacks the mental capacity to make the decision about the proposed eligibility assessment and care planning’. As I say, I don’t know if one can take precedence over the other or whether there should have been a more general test before doing tests for both areas. The well-being test I think was done a few days before the assessment and came with lots of questions that apparently they’d chatted to Mum about. Raises eyes to heaven again - Mum hasn’t been able to chat for at least 18 months! The capacity form for the assessment process was done at the start of the meeting and just signed off by the consultant. Can’t get social services to respond to me at the moment - matter has been escalated above our current contact but she’s not passed on details as to who will be dealing with it or when I can expect to hear back. Have chased and will check this with them when they deign to respond!
The family home is safe currently as Dad’s living there but there are quite a few savings/pensions etc in her name ... none of which she’ll be able to remember/access/understand. Would be highly amusing to see what they say if we tell them that as they’re happy for her to choose a home for herself, presumably they’re happy for her to sort out payment ... no doubt they’ll remember the LPA then!
Anyway, thanks again for all your help and apologies in advance if I need to keep badgering you.
Wishing you all the best through what I know must be a really difficult time.
C
Hi C
No, your not badgering at all. These processes are really quite convoluted.
The fact that they used the word chatted could be part of the grounds of a challenge. The Capacity Act states that all forms of communication should be tried. That would include pictures and in our situation hand squeezes. When they complete the form they are required to state the form of communication.
Neither Capacity Test has precedence. However the conflict between the two could be grounds for a re-assessment. Time is also a factor with fluctuation ability to communicate or fluctuating capacity. When there is fluctuation they are required to try again until they get a good time to assess.
As the Attorney you are well within your role in asking for a further capacity test. And, did the Social Services have a doctor assess too? It is a legal requirement.
If your Mum has stated that she wants you to choose the home then as they have deemed her to have capacity they have to go with her decision 
It sounds like you are doing a superb job. Your Mum is so lucky to have you i her corner.
Thanks - Things are on a plateau her at the moment. The pressure is off a bit for now.
Best wishes
Kevin
Poor you. It is so horrid and like you say you could well do with out it. What Kevin says covers everything so will not add anything except good luck. Love AliBee
Thanks AliBee1 - thoughts really appreciated. Just back from Wales and going through Kevin's comments. Onwards and upwards - sigh! xxx
No practical help I'm afraid. Just support. It makes me so cross that so much time and money are used up to thwart those who are doing a sterling job coping. These battles come when we are least able to fight and not feeling our strongest.
You seem to me to be doing really well. Good luck and a big hug from Jean x xx
How true Jean.
Aww, thanks Jean. Riding the roller coaster of emotions at the moment but know Mum would want us all to keep at it so we'll keep going for her. Big hug right back. Cathy x
So sorry to hear of this awful battle. Kevin has given fabulous info - nothing g to add but love and support. Knowing you are not alone in these battles can help
Love Tippy
I know and I’m so, so grateful. As he says, it really is a fog of conflicting information and I know I’m not alone in having the feeling that I’m drowning in a sea of medical and legal terms, half of which don’t seem to make any sense at all. The messages of support from everyone on here are a great source of comfort and are really helping to keep the fighting spirit alive when it’s seemed too hard to carry on, particularly over the past few days. Big, heartfelt thanks xxx
Oh WRD, I am so sorry to hear your situation is so difficult. I often say to people looking after Mum is the easy bit it's dealing with the "professionals" that takes it out of you. But I am really lucky in that we have a great Community Matron who really took all the CHC problems off us and handled it herself. We could do with more people like her & less of the job's worth.
Keep battling, do think the major motivation sometimes is to wear people down so they give up. How's your poor Dad coping with it all? Must be a worry for him, he must be so thankful he has such an engaged daughter helping fight for your Mum. Good luck with it all. xxx
You’re so right - it’s like there’s some massive conspiracy across the NHS and social services to make life as difficult as possible.
Dad battling on through it all - he’s being an absolute star with Mum and just wants to get her into a nice home now. It’s not easy and there are plenty of lows but we’re fortunate to be a close family and will fight to the bitter end together. Plenty of gin and wine at the end of the day also helps!
Hope all ok your end?
Xxx
Yes things are ok here, Mum slipped out of her shower chair last week and OT pulled strings to get her one that is a much better fit - things you don't realise until you find out, that things like shower chairs do come in different sizes and also how little Mum has got, so that a shower chair that was the right size now swamps her. Anyway she now has a very comfy padded seat version, with much better arm support, 3 inch smaller seat - in fact it's probably more comfortable than her wheelchair! Losing another great carer but she's only 26 and has an opportunity in the NHS offering her training, so though we will miss her lots & lots, we wish her well.
Hope you can get some relaxation over the w/e, so you are ready for battle again next week. xxx
Continuing Healthcare Farce
In need to rant!
Floor thru lifts
