My Father in law has advanced PSP and can no longer do anything for himself. His wife is his main carer with the help of 2 calls a day to get him up washed and dressed and another call to put him to bed.
He has refused to be PEG feed and now can only eat things like mousse even his meals liquidised causes him to choke, He is losing weight and spends most of his day with his eyes closed and we never know if he is sleeping or awake. He can no longer have a conversation with anyone and even watching TV is out. I think it is totally unjust that he has been refused CHC on the grounds that his community nurse says he is in a stable condition, Our community nurse is new to the area and only called twice before giving her professional opinion having never heard of PSP before!!! . I had letters from his GP, SALT OT and social worker all saying that he needs CHC. Any advise on what to do now would be appreciated.
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capsey31
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In regards to fhe qualifying criteria for CHC funding, the actual medical condition is somewhat irrelevant, the decision to award or not is based purely on whether the severity of the patient's needs fall within certain domains, low risk, medium risk and high risk. As I understand it, the patient has to have at least one or two needs in high and perhaps 4 or 5 in medium, or other combinations, and that's only the beginning. If he "passes", then a further more detailed assessment is made. This is more or less the explanation I was given when my husband was assessed last year by the district nurse, she had no knowledge of PSP either.
Hi my mum has chc and has done for 9 months I believe we got it with the tremendous support from our local hospice , where she went once a week . It was our 2 nod assessment . You can see the criteria on the net . I would ask for a second opinion . Mum scored high priority for risk of choking , falling , pressure sore risk , inability to communicate . They will usually reassess after a year but if you think things have changed they will do it before , also I think it depends on which area you live in . Hope this helps a little and good luck x
Sorry Capsey, I have not had the pleasure of dealing with these people yet (!!!!). But from what I have heard and read here, they are a bit like insurance companies, always say no to the first request no matter what!!!
So I'm afraid it's like the rest of this "...." Disease you have yet another battle to fight. Please don't let it get you down, I know you must be feeling this is one battle you should not have to fight and I agree. People like this should be on our side, but like the rest of the medical profession, they know absolutely nothing about PSP!
One bit of advise I have received is, ALWAYS answer the question for the WORST day, not an average day!
Best of luck, we are all with you in this terrible war that we are fighting!
It maybe that you can get the nursing element . When mum was refused CHC at first they did say if she was to go into respite or ft care they would pay 108 £ a week for nursing costs ! If u need to chat further my email is elizalou1719@gmail.com and I will give u my number x good luck x Louise
Hi capsey31 If you haven't already looked the following web site gives details of the criteria for CHC and where to appeal an unfavourable assessment. Although not a medic, from my experience, I consider PSP scores almost a full set of A s in the checklist, particularly in the later stages. You shouldn't have to do battle for the help you need but it seems ignorance of the disease within some sections of the medical profession is only matched by their arrogance. There is no 'stable' condition with PSP, the clue is in the name PROGRESSIVE SP and guidance when completing the checklist suggests changes likely to take place within the following months should be included in the evaluation. I am sadly reaching the conclusion that some NHS employees are more interested in satisfying their employers budget constraints than attending to the needs of the patient. As dorothy-thompson explains if you satisfy the checklist this only entitles you to a more detailed assessment!!!! Oh what joy!!!
I hope the web site helps and best of luck with your appeal. Regards Jerry
Thought it might help if I copied the relevant paragraphs from the notes on completing the CHC checklist.
20. Where it can reasonably be anticipated that the individual’s needs are likely to increase in the next three months (e.g. because of an expected deterioration in their condition), this should be reflected in the columns selected. Where the extent of a need may appear to be less because good care and treatment is reducing the effect of a condition, the need should be recorded in the Checklist as if that care and treatment was not being provided.
24. Individuals and their representatives should be advised that, if they disagree with the decision not to proceed to a full assessment for NHS continuing healthcare, they may ask the Clinical Commissioning Group (CCG) to reconsider it. This should include a review of the original Checklist and any new information available, and might include the completion of a second Checklist. If they remain dissatisfied they can pursue the matter through the normal complaints process.
Thank you all for your replies I have started the process of appealing but this can take up to 3 months before it goes to panel. Unfortunately I don't think my Father in law will have 3 months. I am going to contact our MP and also the newspapers. It is a total disgrace that they can treat people like this. It's all about budgets and meeting targets and not about the person. My poor Mother in Law is devastated as know she feels the only option is to put him in to a nursing home full time which she promised him she wouldn't do.
Hi capsey31 dibber's last sentence says it all, the service it not 'National' but post code dependant. Another significant factor is the individual described as "an excellent lady from the NHS" - I don't think your community nurse quite measured up to that. In my case I had the help of an "excellent lady" from social services, I hope you find your "excellent lady" soon, they are invaluable.
I'm sure there is little that can be said to console your Mother in Law but she must do whatever she feels is in her husband best interest. She is not super human, and you would have to be to do all that is necessary to minimise the distress of a loved one in the latter stages of PSP, without the necessary professional support. Good luck with your endeavours. J.
So sorry to hear of your plight! Our dear Mum has Psp been in care home since November 2011. We applied for CHC very soon afterwards only really finding out about it from web. We had an excellent lady from nhs visit mum and assess her and although it took a while and quite a few people on board mum was very lucky to be awarded it first time. By then mum had very poor mobility not able to stand on own and she was extremely aggressive and vocal. Think this was the main reason for getting it. Unfortunately mum is in final stages now, not eating, totally immobile and hoisted everywhere, completely blind and has and still losing severe weight. Bed bound now due to pressure sores. We are now preparing for the end. Sorry to ramble! Keep persevering with the chc because I have heard that appeals usually do get awarded.
We live in West Sussex. I am sure we would have got the CHC If it wasn't for the input from the community nurse. Our GP was shocked this evening that it was refused as he believes Norman is in the final stage of this cruel disease. I am going to contact our hospice again on Monday in the hope they will be able to offer some support. Again Thank you all for your helpful advise.
Hi Capsey31. We live in North Devon and my father who has PSP has also recently been turned down for CHC funding. We have the first part of our appeal (called a Local Resolution meeting) in 2 weeks time. He was turned down on the basis that the panel felt his needs were neither complex, intense or unpredictable. Now anyone who has ever cared for someone with PSP will agree that they are so far from the truth its unbelievable! Again this was because they knew nothing about the condition and the assessor didn't bother to find out before she walked through dads door. My only advice would be, do not give up! If people with PSP don't qualify for health funding then I cant believe anyone does! Remember to look at the relevant parts of the CHC framework (people have already quoted parts above) and familiarize yourself with the Coughlan case as a precedent for CHC funding. Oh and one last thing, ask for vision and eye problems to be recognized separately in the 12th domain as this severely impacts on many of the other domains making them MORE complex, intense and unpredictable!!
I wonder can the panel provide you with a definition of complex, intense and unpredictable?
And what diseases and scenarios they feel fit these parameters given PSP and your fathers circumstances do not fit?
Unfortunately if PSP is felt to be 'simple, moderate and predictable - a reality check on living needs is required for everyone whoever has suffered from the disease.
I think its great you pointed out the eye and vision problems as it certainly goes a long way to getting recognition. I remember reading an article from a gentleman in USA that unless he continually reiterated this aspect, each care service for his wife would have been refused.
Hi Alana. That's a good point I will ask them to give me examples and see what they say! I cant find any definition as to what they mean by complex intense and unpredictable, much like there is no actual definition of 'primary health need' which is the basis of CHC funding. I also agree with you about your comment to Capsey31, there's no room for sentiment with these people you have to be clear concise and clinical however hard it is talking about a loved one in that way.
I've been presented with different scenarios & ...
Unfortunately at the end of the day what really helped were two things - a really tenacious business like mean spirit (like a dog with a bone!) and exploring the option of people not being on the scene who had been dedicating their lives for their loved ones...
For my husband to ultimately receive generous funding I first (it truly seemed) had to became unwell and needed several internal operations, before systems by default were put in place. For my sister I was too worn out to continue.... a friend who's husband had a lung disease and disabled children a similar happened...
So I wonder what would happen if you raised the statement - that you and your mother-in-law also needed a break for your own health (which is a very reasonable and real considerable) what services into the home would be agreed to and why - perhaps worth looking into?
Do you think we shoot our selves in the foot as far as the caring side of things , they have to ask themselves what happens if we the carer isn't there . They just can't imagine what we do 24:7 . It's Sod's law if you call the Dr or nurse out they are not at their worse .
I have enquiries as yet . It's at the back of my mind though . It would take so much pressure off if we did have CHC.
I didn't realise there was such a thing as CHC when my mum had a severe stroke and while she was in the nursing home I continued telling them at the assessment we had yearly how good my mum was when she wasn't . I didn't want them to treat her as if she wasn't . She went into a coma the week she died and it's then they told me she was eligible . She had been from day one . !!!!!!
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