Thought i would start a dedicated thread for this subject.
I wrote a about the continuing care (cc) application we had made a couple of weeks ago.
John scored very highly on the first stage and everyone thought he would be a shoo in for the second stage. I suppose it should be no surprise, that the assessing triage nurse, who has never been anywhere near John, thinks that his scores are inflated and we need to 're do ' part of the assessment. Our Community Matron (cm) says she has never had this response before.
In the meantime John has been suffering with pain and blood pressure issues, so after I had a hissy fit ( I hate how all this makes me behave at times) John has a bed in the hospice for a few days, which is wonderful. Hopefully the hospice can help with the c.c. I will continue with the story as it unfolds.
Best Wishes to all.
Amanda
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Continuing Health Care and the assessments are all part of a fairly strict legal framework. People cannot just step in and have stuff redon. There are protocols and rules.
I am assuming you are referring to the DST Assessment?
Who is this triage nurse? Triage nurses deal with wounds etc and have no say in the DST or CHC.
The CHC use specially trained assessing nurses and a Social Worker is required to be present at the DST assessment. Even the committee who view the funding application can not overturn the assessors scoring.
Once is done it is done. The original assessor can come back for more information, before they complete their opinion.
Please come back and clarify and I'll see what I can do to help. Should you want
Kevin, hello. Thank you so much for your response.
No we have only got to the initial assessment stage. John was scored as having 3 As and 4 B's, which i believe should be a green light to go to the second DST stage, but there has already been an intervention to say 'go back and do it again', which still seems to contravene the guidelines. I will see what our CM says whrn she is able to come back to see us, and if the Hospice can help.
Hello Amanda. Sorry I know little about CHC and so can't help but I see Kevin has responded who without doubt is the expert on these things. Fully understand your 'hissy fit' - I always say sometimes to show your anger or throw a (controlled) tantrum, makes people sit up and listen.
So pleased John has a short term bed in a Hospice - 14 months ago Jax had four days in our local hospice just before Christmas to get her medication in order; it was such a help for her and me.
Good luck on the CHC front and you continue to have your 'hissy fits'! Take care, Ian
Hello Amanda, Very sorry to hear you are having such a battle. Reading Kevin's reply I would say you are well on the way, I also agree with Ian it doesn't hurt to throw a tantrum occasionally. I'm sure a lot of people with MSA are going to have to face this battle further down the line. Try and stay positive, all the best, Carol
Hi Amanda, so pleased you are hopefully getting help from the hospice. We found with dad that they were very helpful and it is because of them that we obtained extra funding for him . All our family have thrown hissy fits at times! It is hard not to when some people in authority do not understand the impact of the condition. Sending lots of love and strength to you.
Watching with interest Amanda as chc is something we are thinking about for my mum.
Just had my wife assessed for continuous NHS care througj the dst assessment. I must admit thay the nurse practitioner and the spcial worker were "treading on egg shells" whilst filling the form out as it seems that the form does not seem to take into account tge automnic failue symptoms that you get with MSA. I.E question "is the pacient weight barring". Well my wife has no balace and cannot walk one step on her own nor can she stand for more than 30secs on her own, and if her blood preasure drops she hits the deck straight away. Yet because she helps me by moving her feet and barring her own weight for a second or two during transfers, they were afraid to put that she wasn't weight barring.
They seid that over half come back for reassessment. But in the end my wife has got through the dst assessment first time and she can get help with continuous care when needed.
That is precisely the problem Kevin. Well done for seeing it through, and this knowledge will hopefully help others negotiate the maze.
John is still in the hospice. From what I can see, they are amazed that I have cared for him alone for so long. Lots of helpful noises bring made, but we will see what actually happens when he is discharged.
NHS continuing care is not means tested and comes from the NHS budget. If you don't get it you are supported by the Local authority and that IS means tested.
The criteria are strongly biased in favour of MEDICAL care. For example if the patient has bed sores and needs nursing care that is a plus. If you have kept them free of these awful things by good care that is a minus.
They are also biased against neurodegenerative diseases where the long term problems of feeding, balance, speech and incontinence and all the rest are regarded as SOCIAL care and don't count
My experiences four years ago left me very bitter. The third refusal came on the day my husband died in spite of the forms being filled in by experts who were confident of success
Parkinson's Uk at that time published a very critical report on NHS coninuting care which they concluded was not fit for purpose
That purpose was to provide a uniform system all over the country with clear transparent criteria.
That did not happen mainly because the whole thing got submerged in a financial battle between local authorities and the NHS to off load the cost.
That was four years ago. I hope things are better now.........
I am so sorry to hear about your trials with CHC. I too have had to fight that fight. Caring is hard enough anyway, the stress of getting CHC is something we do not need.
No, it hasn't got easier. CCGs as struggling for funds and getting CHC is Kafkeresque.
Anyone applying would do well to read the information articles on the Beacon (NHS) CHC Website. They are the clearest and most informative that I have found.
Beacon are an 'arms length' NHS advocacy service, just for CHC. That is they are very independent. They provide information, advice and advocacy surrounding Continuing Health Care. They also give 90 minutes free advice over the telephone. This can be used up in a number of shorter calls.
After that they have very reasonable rates for advocacy.
that sounds like a really helpful service Kevin thanks for highlighting it.
We had success with our CHC application because the hospice therapist and social worker were at the MDT meeting with the Nurse assessor and they were able to speak quite strongly at times that she was struggling to decide what to put in the various sections and was obviously trying to diminish the effect of some of the categories - they just wouldn't let her!! Our process was restarted after the hospice stay and they were so helpful. But as Freda says there has to be medical/nursing needs for the NHS to take over the care so PEG tubes, incontinence, breathing issues with CPAP or suction, or skin issues which need regular monitoring or intervention. other things are just care.
Amanda - enjoy your rest whilst John is in the hospice and take big chunks of time for yourself. I think I was there too much when Geoff was in and I didn't make the most of it, I did most of his feeds etc when they would have been more than happy to take that over.
Having supportive professionals at the DST is really helpful. Brilliant
It's probably not a good idea to think clinical needs as oppose to Social Care needs.
There are two reasons for this. It might only take one clinical need to put the applicant beyond the legal limits of the social services. The NHS is then pretty obliged to pick up on the funding. I have known a few people who got their CHC because the Soc. Serv. said it was beyond their legal limit.
Secondly there is a gloriously vague statement in the Nat. Framework for CHC: “Reaching a recommendation on whether the individual’s primary needs are health needs should include consideration of: Nature… Intensity… Complexity… Unpredictability… Each of these characteristics MAY, in combination OR ALONE… [i.e. only one of them]… demonstrate a primary health need…”
So best course of action in an assessment for CHC is to get everything listed. There are so many things we, as carers do, which we forget to put down and which fall straight into the phrase above. Such as the need to monitor the illness daily in order to catch step down deterioration and liaising with agencies to meet changing needs.
So if someone falls from time to time it is a social care need, but if they have a condition which needs monitoring closely because it is prone to change or develop suddenly, then it may become a health need.
My view is get it all down and state the worst case scenario.
Hi Kevin. You are absolutely correct everything needs to be on that form and based on the worst case scenario but they will try to lower the level of what you say to ‘but that can be done by a carer’. They are under such pressure to keep awards down because of the financial situation that you can end up questioning what you are saying and agreeing with them if you aren’t strong or supported.
Thanks for popping over to reply - you sound like a very useful person to comment on these kind of issues. All the best to you and your wife. Diane
Thankyou Kevin for your excellent advice. We will soon be heading this way and I certainly had not considered your points. I am now !! Sadly my brother is resistant to any sort of care or intervention, which makes it so very difficult caring for him. Thanks again Lyn
Kevin, hello. Thanks for the contact, I suspect I will need to use it
We all know that the barrier between social care and 'medical 'care is very high.
Things are probably more challenging with John, as he has pulled out 2 catheters, so does not have one. It is therefore also too dangerous to fit a peg, he doesn't want one and that would just get pulled out also. He doen't have any sores etc. Because he is so well looked after, but it is at the cost of my health and sanity.
At the moment, I am the one more likely to keel over. It is awful to say, but on the assumption he will not get any funding I am dreading him coming home. Trying to restore my strength while he is being looked after. As you say Diane, trying to stay away from the hospice to some extent.
Do look after yourself. Care giving is the most demanding thing I have done in my life and I worked in the NHS at the high stress pointy end.
I really should not be on this forum my wife has PSP and so that forum is really my 'home' so to speak, but somehow a post about CHC caught my eye when I was doing a search and I thought to come over here to reply.
If you or anyone wants input from me, do a post here and message me to tell me. I am more than happy to help on issues of social services and CHC including fast track.
Help from anyone is needed never mind if the are from a different forum. These neurodegenerative diseases have so many problems in common even when the symptoms are not the same. Thanks for your input
Yes I remember trying to work out on the back of an envelope how long I would be able to keep paying for care when Victor came home from hospital and trying to work out how long he might live so that i could best spread the money out. Unless I wanted to discharge him myself (which may sound all very positive and knight in shining armour but is a very bad idea) I had to accept a care package that cost me £1,200 per week. He only lived six weeks but how we would have managed if he had lived longer I do not know.
The main cost was having to have carers in twos to do the four times a day hoisting. That would have had to go and i would have had to do that alone. ...age 74 and 5ft 2ins heaving about a (formerly) six foot man dangling on a mobile hoist in a sling - like a mad stork delivering an oversized baby
Well we are all good at doing the impossible aren't we? They are right when they say that what doesn't kill you strengthens you.
Hi there, my brother George is on this terrible journey and is self funding.... Can you explain as given what care your husband obviously needed he didn't get the CHC. I am really concerned as to how we will care for him... Is it because it was personal care not medical? I will not be able to do personal care and he does not want me to. We are looking into getting a carer in a couple of times a week but at the moment he is totally resistant to any outside help. Thank Lyn
This was before my husband died in July 2014. I am not up tp date with what happens nowas so much has changed
he had the full rate attebdabce allowance of about £80 which was not meaans tested. He also had a some day care from the local hospice at home. Also one session a week where someone from our other hospice came in to read to him for two hours every week. I was sole carer and so that gave me some much needed time off. That was about it.
Your brother's finances are of course separate from yours. but self funding means exactly what it says unless you can access any other funds. The upside is that you get choice.
I am sorry it has taken me so long to respond to your original email.
It must have been so awful in the last weeks with your husband to have felt so abandoned, and to have been so completely drained, exhausted and worried financially.
I completely understand the bitterness and anger you felt. it must have made your grieving for your husband so much more difficult, and left you feeling alienated from our society and its systems.
I think we still have quite a long way to go, but I have already given in to bitterness at times as it has felt like we have been thrown on the scrap heap, having worked very hard and payed lots of tax for 35 + years.
John's stay at the hospice (he is still there) has fortunately restored my faith in some sort of fairness in the system, even if it has not given me much hope for the longer term.
I now feel much more able to carry on looking after John for a further period at least, no matter what the care situation is.
Lyn, please do your utmost to persuade your brother that you all need as much help as is offered, and certainly he will need to pay for some additional help at some point. Your relationship and your health will inevitably deteriorate otherwise.
Victor always reckoned that he only thing he could do to help was to gracefully accept what had to be done even when he did not like it. He was so right..had he not felt like this my job would have been even more difficult and eventually I would have resented him.
If the patient can be helped to understand that accepting care is not a defeat and and indignity but a postive act of help to his nearest and dearest it is a huge blessing.
To be honest he could have stayed on the ward at the hosptal but it was not something i could contemplate doing as he was spending all his waking hours trying to escape in undignified ways which I am not going to describe. The care at the hospital was very good as long as I kept an eye on the medication.
Brilliant, and depressing article by Melanie Reid in The Times Magazine this morning. Melanie's column is the first thing I read on a Saturday morning. I have posted it on my Facebook page. Trying to work out if I can 'share' it on this site.
If you open the page you are reading in your browser and then copy the link, then you should be able to paste it on the page here. I have had mixed success!!
I was able to share it to the UK&Ireland MSA Facebook Group today. The Times allows you to view 3 articles per week without a subscription. Melanie is inspirational.
Jane, hello. Thanks for your input. Hopefully everyone can now access the article if they wish.
I saw your photo again this morning. It is beautiful. Thinking of you.
A quick update on our CHC application. John is still in the hospice, but is OK. They have sorted out his pain, and he seems to be much more relaxed. The hospice are now driving the CHC application and will keep John in the hospice until it is complete, which will be at least another 3 weeks or so. John wants to come home, but I have asked him to tough it out. The hospice think that John should be a dead cert for getting the CHC, but know that the current environment is totally unpredictable given lack of funding. We will see what happens.
I think the message here is that when you get to the stage where you think CHC is appropriate, try to get an admission to your hospice. I think they need you to be resident to offer full support.
John has now been in the hospice for 6 weeks, but will be coming home next week. He has been looked after beautifully, I feel like a different person, and we have got our relationship back. Thank you PBL in Norwich.
PBL is an NHS hospice, which has probably helped us. They took over the continuing care application, and everyone involved in it has been wonderfully capable and professional. Such a different experience to the last few years. Fundamentally the hospice are not prepared to discharge John until we have a significant care package in place at home. John has been awarded continuing care and we will now have a live in carer plus a supplementary carer to help with moves.
Without the experience and professionalism of the hospice discharge team, the application would have failed miserably.
If you feel you have reached the point where continuing care is necessary. Try to get experienced professionals on your team. Well meaning health professionals with no experience of the system are likely to be eaten alive.
I am so thankful for everything that has happened over the last few weeks and can now give John the support he will need over the coming months.
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