Continuing Health Care - Preparing to fight PCT's decision

realshannon

update from me again, despite organising within the dates given to us, only one healthcare attended our checklist and hopeful assessment session. However, he was brilliant and did listen to everything we said. he was the one we met at the hospital so could see the difference in her health. however, because her mobility is now non existent that category scored low again as she was again not deemed at high risk of falls as she doesnt walk! this happened last time and she did get back to using her frame but this time maybe not. anyway, he is going to discuss with the full team and get back to us, but it looks like for this time, we may get the nursing care element, which will help. review again in a few months and she then may get the CHC, as she will only get worse. her dementia has again changed dramatically and this has been acknowledged. will update as and when I hear more but at last we did feel we were being listened to which means alot

realshannon

Update from me, we have unofficially been told by the matron at the home that we have the nursing care element but sadly a couple of days later my lovely MIL passed away. The doctor who last saw her went on holiday, so we havent been able to arrange anything as it was classed as unexplained and needed to be referred to the coroner. I hope that doctor had a rotten holiday and it rained every day. The nursing home was fab and I await confirmation of the nursing care. Not sure at this stage whether the family want me to fight for the backdated care fees but we must do one thing at a time. I do feel like Spike Milligan when he said "I told you I was sick!" (on behalf of her) no one listens to the family, we know them best and how they are etc

Savvy_Sue

so sorry for your loss shannon

Katykat

R Shannon, commiserations from me too. If its any consolation, it was only when my mother died that the PCT reversed their decision. I do however feel that it was a coincidence that I formed a particularly strong case for the IRP. I think the fact that mum died just 2 weeks before the IRP was to take place perhaps gave them a cut off date rather than awarding funding on an indefinate basis. It shouldn't happen, but unfortunately it does. If I ws you, I would go the whole hog and apply for backdated funding. You can only do that if there has been a deviation in the process, but believe me, there will have been. If you need any more information, PM me.

System

I can really empathise with how many of you are feeling on this thread. I pursued the local PCT for a refund of care home fees for my mother and also for my father. In the end the NHS was forced to repay over £100,000. It's a horrible battle to have to fight.


Here are 3 things from my own personal experience that might help if you're currently going through this:

1) If you have a solicitor friend, take them with you to an assessment or to an Independent Review Panel hearing (IRP) - and let the assessors know who they are. They don't need to be acting for you in any legal capacity. Simply mention in the assessment that they are a 'solicitor friend'. It can encourages assessors to do things properly.

2) Get as many relevant health practitioners as possible to write letters outlining your relative's clear health needs (including from a neurologist, physiotherapist, GP, etc – whoever is relevant in your relative’s case). Make sure every assessor has a copy of every letter. Unfortunately, you can't always assume the assessors will have the right information about your relative's health needs - and it's vital that you provide as much as possible.

3) Many families feel that the initial 'Checklist' is used as a means of filtering people out of the assessment process. If you believe your relative has health needs that require NHS Continuing Healthcare, and yet they are declined after a Checklist assessment, you can insist that the 'Decision Support Tool' is used. The assessors are also legally obliged to give you sufficient time to prepare for such an assessment.

Hope this helps a little.

Angela

robv_3

Applied for CHC for my grandmother in Feb 2009. Well its still ongoing.......

After over a year (in most cases it should be under 28 days) the application was declined. The PCT failed to follow the guidelines in a number of areas including not following the MDT recommendation of yes. If the PCT do not agree with the MDT recommendations they can only refer it back to the MDT and ask for more evidence. Its only in _exceptional_ circumstances (quoting the guidelines) they can over rule the MDT decision which they did in this case.

The PCT CHC team have tried every excuse in the book to get out of it. Lost documents, archive documents, application pre dating July 2009 guidelines although the letter documenting the decision explicitly mentions the July 2009 regulation. and on and on.....

I have now read almost every official document on the subject and endless times pointed out the mistakes the PCT have make.

We had another assessment three weeks ago and the MDT is again recommended funding is given. Now waiting for the official document from the PCT....

Then its the battle to get a refund......wish me luck!

System

Hi Robv

Good luck with the next response from the PCT.

If you haven't done so already, it might be worth telling the PCT that you will be taking your case to the Strategic Health authority - to an Independent Review Panel. That might kick them into action.

Angela

robv_3

got confirmation today we have qualified for CHC.

The appeal to the original decision was put on hold waiting for the results of latest application triggered by the appeal. Was advised to wait at every stage otherwise you may get passed back to the original PCT saying they did not get a chance to fully investigate.

Katykat

That's great news Robv. And well done for sticking it out for so long. I too won my case this year after 3 1/2 yrs. And as you know, it's a stressful time. You need time now to chill a little. Just to give you a guideline re refunds. I got my approval letter April & after another couple of reminders from me, the money was paid in July. I did get all care fees plus interest but I am now fighting for the money we lost on the forced sale of the house.
Have a drink or 3 to celebrate.

System

Hi Robv. That's great news. Well done!