I am so angry that one of our number was turned down because of lack of evidence.
That CHC is applying a professional level of evidence to a carer. Professional evidence requires dates and frequency. We are just carers tired and trying to cope. The problem is that the law is quite vague in places and deciding what is and is not evidence is not described.
I would say to all who are or might be applying:
1 Keep a diary
2 If you haven't make it up! An example of evidence for falls need only say "3 times this week", but a diary would be better. They won't ask to see it, after all it's your private diary.
Next appeals: You lost your appeal and your letters go unanswered. By unlawfully not complying with the Code of Practice the CHC team is preventing you from both appeal and further appeal. This is unlawful.
Make a complaint as soon as you can. There is a time cut off of six months.
The days are now gone when an MP's letter would make them pay attention.
Enter the Parliamentary Health Service Ombudsman...Think Men in Black... well, maybe grey and without the gizmos.
The complaint to them might be that the CCG is not following the Code of Practice both in terms of *fill in here*and by not responding to your complaint within the time scale (sorry to late at night for me to look that up, but I will do if asked) and that is depriving you of the proper avenues of resolution as laid out in the Code of Practice and the law.
I do hope this helps someone a little.
I am here if folk want more detail,
Best to you
Kevin
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We are gathering our forces to have another go at obtaining CHC. Dad scored low on many points (much to our shock and disappointment) but the condition has changed so much in last 6 months - it now seems farcical. he didn’t score high on mobility despite the fact he can’t walk, or hold anything for long ie cutlery, or a drink etc. We think he was marked down as he could (with help) pull himself up onto mobility walker. Neurologist is also rather perplexed as to why it wasn’t given....
Will properly research this time to be prepared so your information is always useful.
I think keeping a diary was the way forward for us with CHC I kept a detailed diary, I am sure it helped us with getting CHC, also Professors Morris, district nurse and a very knowledgeable social worker, that knew about PSP. Lovely having you back Kevin, we have missed you xxxxx
When Chris had a downturn in the summer our senior DN sister offered to apply for CHC for Chris. I declined as I thought it was too soon. However she applied just over two weeks ago for me, it has come through and was backdated to the date of the application.
Is this a postcode lottery, or am I just lucky to have medical professionals who have previous experience of PSP?
We now have one hour in the morning, half an hour in the evening, seven days a week. This can be increased as needs change.
I understand that Gloucestershire together with Norfolk has a higher incidence of this dreadful disease and may, because of this, now have a greater understanding of it.
Sorry if this post seems a little smug when others are struggling to get CHC. Bearing in.mind your previous comments, I'll start to keep a diary of events for future reviews.
Why am a flabbergasted every time I read that folk on here who applying or reapplying for CHC funding are struggling to convince the Powers that be that they are entitled to this funding. As far as I can see people aren't applying before the time is right, their loved ones are meeting the criteria but they are unjustifiably being declined this vital resource. Although Ben is now gone I still enthusiastically read posts and am still amazed at this injustice, makes my blood boil. Thankyou Kevin for reaching out to these people to support and guide them with your wealth of knowledge and compassion. To all of those in this awful situation, keep on keeping on and don't just accept their decision, as Kevin says they can be acting unlawfully and getting away with it. It's hard to keep fighting but this one is more than worth the fight, good luck everyone.
I hope it is acceptable to double post. I want to add more to this thread as I fact check and read.
Here is a simple route to use with an appeal against a decision not to give CHC funding.
First the decision for refusing funding should be given in writing. It seldom is. If after two weeks you do not have a decision telephone them and ask.
1 Write to the CHC Team Manager. You can get the name and address by telephoning the team and asking the telephonist. The letter need not be long, just make sure it includes the words, " This letter is a complaint." And "I have been told that the evidence I submitted was not admissible and this does not comply with the National Service Framework" And "Please review my husbands case and explain why my evidence was not admissible."
2 If they respond within four weeks and do not give you a satisfactory response move to step 4. If they do not respond within four weeks move to step 3.
3 They have not responded within four weeks: Write again telling them that you have not had a response and should you not have a response within two further weeks then they leave you little choice,but to take the matter to the Parliamentary and Health Service Ombudsman.
4 As you can see it is quite easy to make a complaint to the Ombudsman.
ombudsman.org.uk/making-com...
Here is an example of how this works. All decisions by the Ombudsman become legally binding for all CCGs in all cases.
Leeds Ombudsman Case, 1994
The patient involved was a man with severe brain damage who was discharged into the community by Leeds General Infirmary with no follow-up care or funding in place. Although his needs had stabilised, he still required a significant amount of nursing care for the rest of his life and so his wife paid for his care in a private nursing home.
The Ombudsman upheld the complaint on the grounds that Leeds Health Authority had failed to appreciate that a need for substantial nursing was itself sufficient to entitle a patient to NHS continuing healthcare and that it was unreasonable for the authority to implement a policy that failed to make long term NHS care available.
This is a case which went to court. The social Services said that 'grogan's' needs were beyond the legal limit of care. The CCG decided that 'Grogan's' needs were insufficient for CHC Funding. The court ruled that whenever the Social Services say that the care is beyond the legal limit of their care, then the NHS must fund.
So if you fail to get funding ask the Social Services to explain, in writing, in what way do they consider the care to be within their legal limit. If they say the care is outwith their legal limit, ask them to inform the CCG. They are legally obliged to do this anyway.
Many have achieved CHC funding following this route.
The Social Services are required to have someone at the Decision Support Tool assessment for this very reason. This is required by the National Service Framework.
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Nineteen and a half thousand a year! 
The fight begins into why my father in law was refused CHC
CHC Funding For PSP 
