Continuing Health Care - Preparing to fight PCT's decision

Snowbird

My condolences to you and your family monkeyspanner, especially to your wife. You have given much help and advice on this thread, and everyone is grateful
Sorry for your loss.

malid

My condolences also Monkeyspanner. You valuable contributions inspired me to arm myself with as much information as possible to fight for CHc for my uncle. As readers of this thread will know, he passed away on the morning of the assessment I had demanded.

Like you, I continue to monitor this thread just in case I can contribute anything that may help someone else.

monkeyspanner

In the summer of 2007 there was a lot of publicity highlighting the vast differences between PCT's Continuing healthcare funding and the postcode lottery in the application of CHC funding. The government countered this publicity by saying the new CHC Framework and Decision Support Tool introduced in October 2007 would addresss the inequalities in the system and help to eliminate the variance.

Figures publicised by Age Concern in April 2008 would suggest that whilst the difference between the PCTs at the top and bottom of the league tables have narrowed substantially there is still an unbelieveable difference per 50,000 of population(by a factor of over 15 times).The government would probably hail this as a success as the difference in 2006-7 was 160 times between the top and bottom of the table.

Additionally and perhaps more importantly this 'improvement' has been acheived by the PCTs at the top of the league tables reducing their numbers receiving CHC funding as much as by those at the bottom of the league tables increasing their numbers.

Overall the numbers receiving CHC funding have fallen year on year between 2006-7 and 2007-8.
Q4 2006-7 30975
Q4 2007-8 29092
The Q4 2007-8 figures are effectively after 6 months of the new framework/DST

When these figures are set against the governments own estimates (June 2007)that an additional 5500 people (cost £220 million) would receive CHC funding as a result of the new framework it doesn't look too good.

In actual fact numbers did rise by about 4000 between Q1 2007-8 and Q4 2007-8 but this has to be set against a 6000 drop in numbers between Q4 2006-7 and Q1 2007-8.

Some PCTs were singled out in the Age Concern report as having reduced their numbers substantially.
Mid Essex
Sandwell
Wandsworth
East Riding of Yorkshire

Gloucester was at the bottom of the table with 5.65 people per 50000 of population receiving CHC funding, even though they have a higher than average population over 85.

Best improver was Derby City lifting itself off the bottom of the list with a 1708% increase.

and Coventry Teaching improved by 362% to be top of the table at 88.06 people per 50000 of population.

The average number of people in receipt of CHC funding was 27.82 per 50000 of population in Q4 2007-8.

For anyone interested in the Age Concern press release which contains loads more interesting figures, here is the link.
http://www.ageconcern.org.uk/AgeConcern/11898975B217420A92EE92F9D24A465E.asp

Age Concern estimate there could be 60,000 people who should receive CHC funding but do not get it. Many of these people and their relatives will be completely unaware of the funding and how to apply. It would appear therefore that if everyone who was entitled received the funding then the rate should be around the level of the highest performing PCT at about 85 per 50,000 of population.

It will be interesting to see if 2008-9 figures show any significant change.

PS. Many thanks for all your kind messages

Errata

Thanks Monkeyspanner - we shouldn't be surprised when everyone knows full well that cancer treatment is a postcode lottery in which the age of the patient plays a part.

ukmaggie45

Thanks Monkeyspanner for these depressing figures.

If my parents had lived longer, I had planned to try for CHC (was just beginning to get to grips with it), but with both of them getting ill and hospitalised and then into nursing homes we've had other problems since, so were out of time to claim after their deaths. The system sucks!

Thanks for all your educational efforts.

Beryltheperil_2

Hi monkeyspanner, just found this forum. You have given me so much encouragement. We are fighting the PCT to as far as it takes. Look out for me on the steps of the Old Bailey for a judicial review if necessary. Our mum has had 2 assessments and failed both even though the first was classed as poor and incorrect. We feel that the professionals know little about the process and any ley person can know more than them with a little research. Age Concern put us in touch with a free advocacy service. The advocates are funded by believe it or not the Local Authority. Wish us luck, we have threatened to expose our PCT who have been underatking incorrect and incomplete reviews. Any help with the IRP stage would be great. Also the Social Services did not take part in any assessments. Should they have done. This could be something we have missed. The PCT have recently judged our mum to have 2 highs, 4 moderates and 2 lows. Originally they said 3 moderates and 2 lows. We believe she has 1 severe 5 highs 3 moderates and 1 low. Amazing how her score increased from round one. Wish us luck. Sorry to hear about your sad loss. Thanks again you are an inspiration.

malid

Hi Beryltheperil
So sorry to hear that you are having to battle all this; it is not easy. There is a wealth of information in this thread and Monkeyspanner's postings were a godsend for me. It's not easy, but you have to try and be calm yet assertive. Make sure you go through every small detail about your mother's circumstances including familiarising yourself with any medication she is on. At one point, I was asked my an A&E doctor if I was in the profession given my 'extensive knowledge and understanding' of my uncle's condition.

The assessment must include Social Services. Clearly the process has to be fair but it would be in SS's interests if CHc was awarded as it would be less of a drain on the local authority's budget (if applicable).

I wish you all the best and do not be disheartened.

monkeyspanner

Hi Beryltheperil
I assume you are about to enter the PCT's appeal process.

In our case this was a 3 member appeal panel consisting of a ley chair, a retired social worker and a senior nurse assessor from a different health authority. We found them approachable and very open to our point of view, but the big disadvantage is that they based their considerations purely on the paper evidence they had in front of them. Perhaps unsurprisingly this evidence was incomplete and did not include the second DST which as in your mum's case showed significantly higher health needs to the first DST. There was a health needs assessment which refered to the second DST but this was very brief and incomplete. An independant retrospective health review had also been carried out by the PCT which reviewed all available records including my MIL's hospital records (paid for and supplied by us) but the results of this review was also 'missing' from the package put forward to the reveiw panel for consideration. Our very detailed written response to the second DST assessment results were also missing from the panel evidence.

Because there was a gap in the evidence timeline we had to attend a second appeal panel. Initially my MIL was awarded CHC funding from the date of her second DST assessment. After talking to the CHC manager in the PCT and contacting the SHA the initial care home period was also allowed. We think that the ley chair also informed the PCT that in his opinion the SHA would be critical of the PCT's proceedures if my MIL's case went to the SHA for reveiw.

The system in my opinion is still seriously flawed due to lack of training and the calibre of the staff undertaking the DST assessments. The other crucial problem is that the DST framework does not spell out what combinations of serious, high and medium assessment classifications are needed for a successful outcome. Therefore the DST still allows for variation of award standard acoss different PCT's. We never got a definitive answer about the decision criteria.

The two key words to bear in mind for a successful outcome are:
Complexity and Unpredictablity of the health needs, so concentrate on those in your submissions.
Also you can argue that a well managed health need is still a need.

I believe the CHC framework does say that social worker input to the DST assessment is recommended but not obligatory. However, I have heard recently of a social worker attending a DST assessment who had to have the word "cognition" explained to them. So I am not sure if their input to the process would have been useful!

I came to the conclusion that persistence is probably your best weapon. Make sure you have as much evidence as you can get hold of and if your mum is in a care home ask them to make sure they make a note of any inappropriate behaviour (however "normal" that behaviour that might be for their clients) and any medical episodes. If you exhaust the PCT's review process you can approach the relevant SHA to perform a review. There is no harm in talking to the SHA now as we came to the conclusion pressure was applied by them to the PCT in my MIL's case even though the SHA were not officially involved.

I do wish you the best of luck. It did rather take over our spare time and was very frustrating most of the time. If you would like any advice about specific points please let me know and I will try to help.

Errata

However, I have heard recently of a social worker attending a DST assessment who had to have the word "cognition" explained to them.

That could have happened because the SW needed to make sure the people using the word had the same understanding of it that the SW did (NHS and SS is riddled with people using words they don't have a complete understanding of) so it helps to make sure everyone is singing from the same hymn sheet.

Excellent tip about approaching the SHA - all Health Trusts hate the SHA breathing down their necks.

Beryltheperil_2

Hi Monkeyspanner , Malid and all

Didnt dare say too much last night but after 3 assessments, 2 panels and 2 appeals WE HAVE WON!!!!!! The funding is backdated to April 2008, and we didnt even have to ask!! Thanks so much to all for your encouragement. I found this website by typing into google CHC appeals. Thanks. Basically our mum is totally dependent on others for her care, she is only 76 (now) so the PCT will be paying out (unless funding is withdrawn) for a long time. We were prepared to expose the PCT for all of the errors they have made and basically highlight other individuals who have incorrectly been denied CHC. Our fight is only for our mother, but if anyone else can drawn any inspiration from our win today then we will have succeeded. The PCT had failed to acknowledge the assessment put in front of them. As our mum had no priorities then we feel in our area, that everyone with these levels will be refused without a fight.
I learned something by reading the posts last night. Our mothers first assessment was poor and missing vital information. The new assessment should have included information from our mothers discharge from hospital in April 08, it didnt. So that was more amunition we were able to use.

Many, many thanks. To everyone out there, dont give up. Have a good look at the NHS Framework for CHC. It is on the Dept of Health's website and it will highlight any areas where they are not following correct process. It even has a phone no for the dept who wrote the policy, so you can check. We were quoting areas and sections to them where they were breaking the policy rules!

A question to monkeyspanner please, at what point did they take away your MIL's old age pension? We know that our mum wont get AA anymore. In our area reviews are held every 3 months, is that usual?

Thanks again, if it wasnt for people like you lot, other people wouldnt be inspired to carry on.:j :T