Continuing Health Care - Preparing to fight PCT's decision

smilelols

Hi Smilelols- thanks for your post. Many of us are very sceptical about the role of social services as unfortunately ( in my case ) past behaviour has been sketchy, and sometimes absent. For instance, at the very beginning of my mums dementia, her Social worker SHOULD have informed me about Continuing Care, but almost the first thing he did was ask her ( a vulnerable lady) how much money she had. This continued through 2 months in respite care, 3 months in psychiatric hospital and 2 1/2 yrs in residential care. At the DST, a different Social worker ( they change frequently) attended & when i asked her if she was going to work to the local ADASS guidelines which were in position then, she told me that it was up to the PCT to make the decision. My mum scored 1 severe, 3 highs and several moderates. This was completly out of the scope of S Services according to ADASS, but she quite happily went along with the PCT refusal to award CC. I believe this ADASS document no longer applies, but have no idea if it has been superseeded by anything else. I really would like to think that SS had my mums best interests at heart as like you say, her money is about to run out and they will have to start contributing. I'm wondering if SS support wil increase when they are left with the bill. I am interested however, in your comment that many LA's are developing "mini experts" within their teams and I'd like to ask if there is any way I can find out if my LA have one.
I'm sorry I sound so negative about S Services, but thats my experience. Everyone would like it to improve, but in the meantime many elderly people are losing their homes and life savings.

Hello
I do understand why some people have such a negative experiance from social services - but we are working to change this!! In terms of 'mini experts' in social services this is something that I know a few LA's are developing particulary following the department of health's recent review of continuing health care. Unfortunatly not all areas are looking at continuing health care as pro-actively as they should be. To find out whats happening in your area I would do the following: -
1) contact the local social services team and ask them if they have a social services lead for continuing health care within their dept. I would be surprised if they dont, but it is possible. If they do try and make contact with them.
2) Ask the PCT how their continuing health care panel operates. do they have an independent chair? Is the panel multi-disciplanry? Do social services sit on the panel and have a vote when it comes to decisions? If not, there is potential to take complaints higher as it could be argued their approach isnt in line with the DOH guidance
3) Its a common mis conception by many members of social services that the whole decisions regarding continuing health care rests with the PCT. Many social service workers feel out of their depth (not that this is an excuse!) when it comes to CHC. If anyone finds that when they work with someone from social services and this is what they get, please challenge it (nothing will change otherwise). I know people will feel like this is another battle, but it shouldnt be. You can always ask for a worker who has experiance in applying for CHC. From my own perspective (and I have dealt alot with CHC) is that I'm actively supporting my collegues to develop their understanding and experiance of CHC so service users and their families should get (in the future) a better experiance of this process.

Also, just as a general point, all PCT's should operate a policy where family members should attend the panel if they disagree with the PCT decision not to fund under continuing health care. They should also have published a clear escalation process if there are disagreements.

I would always recommend that if anyone feels that a relative/loved one needs support from social services, and the worker involved doesnt automatically do a continuing health care check list - ask that they do!!

Just another general point - I see people have been saying that they have been waiting 18 months + for a CHC assessment. In the guidance it states assessments have to take place in a timely manner - please escalate your complaints to the strategic health authority stating this isnt taking place.

monkeyspanner

smilelols wrote: »

Hi Smilelols- thanks for your post. Many of us are very sceptical about the role of social services as unfortunately ( in my case ) past behaviour has been sketchy, and sometimes absent. For instance, at the very beginning of my mums dementia, her Social worker SHOULD have informed me about Continuing Care, but almost the first thing he did was ask her ( a vulnerable lady) how much money she had. This continued through 2 months in respite care, 3 months in psychiatric hospital and 2 1/2 yrs in residential care. At the DST, a different Social worker ( they change frequently) attended & when i asked her if she was going to work to the local ADASS guidelines which were in position then, she told me that it was up to the PCT to make the decision. My mum scored 1 severe, 3 highs and several moderates. This was completly out of the scope of S Services according to ADASS, but she quite happily went along with the PCT refusal to award CC. I believe this ADASS document no longer applies, but have no idea if it has been superseeded by anything else. I really would like to think that SS had my mums best interests at heart as like you say, her money is about to run out and they will have to start contributing. I'm wondering if SS support wil increase when they are left with the bill. I am interested however, in your comment that many LA's are developing "mini experts" within their teams and I'd like to ask if there is any way I can find out if my LA have one.
I'm sorry I sound so negative about S Services, but thats my experience. Everyone would like it to improve, but in the meantime many elderly people are losing their homes and life savings.

Hello
I do understand why some people have such a negative experiance from social services - but we are working to change this!! In terms of 'mini experts' in social services this is something that I know a few LA's are developing particulary following the department of health's recent review of continuing health care. Unfortunatly not all areas are looking at continuing health care as pro-actively as they should be. To find out whats happening in your area I would do the following: -
1) contact the local social services team and ask them if they have a social services lead for continuing health care within their dept. I would be surprised if they dont, but it is possible. If they do try and make contact with them.
2) Ask the PCT how their continuing health care panel operates. do they have an independent chair? Is the panel multi-disciplanry? Do social services sit on the panel and have a vote when it comes to decisions? If not, there is potential to take complaints higher as it could be argued their approach isnt in line with the DOH guidance
3) Its a common mis conception by many members of social services that the whole decisions regarding continuing health care rests with the PCT. Many social service workers feel out of their depth (not that this is an excuse!) when it comes to CHC. If anyone finds that when they work with someone from social services and this is what they get, please challenge it (nothing will change otherwise). I know people will feel like this is another battle, but it shouldnt be. You can always ask for a worker who has experiance in applying for CHC. From my own perspective (and I have dealt alot with CHC) is that I'm actively supporting my collegues to develop their understanding and experiance of CHC so service users and their families should get (in the future) a better experiance of this process.

Also, just as a general point, all PCT's should operate a policy where family members should attend the panel if they disagree with the PCT decision not to fund under continuing health care. They should also have published a clear escalation process if there are disagreements.

I would always recommend that if anyone feels that a relative/loved one needs support from social services, and the worker involved doesnt automatically do a continuing health care check list - ask that they do!!

Just another general point - I see people have been saying that they have been waiting 18 months + for a CHC assessment. In the guidance it states assessments have to take place in a timely manner - please escalate your complaints to the strategic health authority stating this isnt taking place.

Thank you for your comments.

In my experience escalation and complaints proceedures do not always work. Particularly when poor sevice is backed up by poor management.

The comments on this thread presumeably reflect the level of service provided by Social Services to the people posting.

I hope that Social Services in all areas are now taking the approach you outline but this is so far adrift from the reality we experienced.

arnold49

Hellosmilelols,
I wonder if you could help answer a question please.

Are there any documents intended as guidance to SS which indicate which aspects of care are beyond their remit and therefore fall within the realms of NHS care please?

For instance peg feeding - welfare or health
Hoisting - welfare or health etc.

regards
Arnold.

smilelols

Hi Arnold
In response to your question - things arent that clear about at what point health should be funding a service rather than social services. In relation to for example peg feed. If someone is peg fed this would be looked at under nutrition (on the decision support tool). Now if someone isnt being fed orally and just using the peg and there is no diffuculty this doesnt indicate a primary health care need. However, if there are problems with the peg ie ongoing infections in the site, tube needing to be replaced more often than normal or someone is still being feb orally and there are diffuculties you would score higher in that domain on the decision support tool.
The same applies to hoisting - this is looked under the mobilty domain. If someone simply requires hoisting and there are no difficulties than this would prob score quite low on the decision support tool. However if there are other diffuculties perhaps spasms whilst hoisting or distress caused by confusion this would score higher on the tool and potentially link with other domains (ie congition) and this could indicate a primary health care need.

In essence someone could have needs in all areas of the DST, but still not elgible for health funding but if there are clear links between the domains you can show intensity/complexity of support (or depending on the type of diffuculties looked at you could look at unpredicatability)

arnold49

Thank your for your reply smilelols,
but is there a document that Social Services use, which explains the links that could occur between the domains?

Many in social Services are not nursing trained.
So how do they come to these conclusions?

Is it then just a lottery which Social worker you get which will determine NHSCC or not?

It is really a document I am looking for by which Social Services would be guided as to how they are able to come to these conclusions.

Many thanks,
Arnold.

smilelols

Hi Arnold
I'm sorry but as far as I am aware there are no 'reference' documents that are available for anyone (aside from the department of health's guidance which is on line).
My knowledge of continuing health care has come purely from experiance.
As I have mentioned previously I would always suggest if a continuing health care assessment needs to take place, asking social services for someone to attend who has experiance.
Sorry I cant be of more help with this particular question

Kind regards
smilelols

Errata

http://webarchive.nationalarchives.gov.uk/+/www.dh.gov.uk/en/SocialCare/Deliveringadultsocialcare/Continuingcare/DH_073912

This is the website for the Decision Support Tool used in assessing someone for continuing health care. HTH

Katykat

Smilelols- I am having great difficulty understanding the rational for your comments --
In relation to for example peg feed. If someone is peg fed this would be looked at under nutrition (on the decision support tool). Now if someone isnt being fed orally and just using the peg and there is no diffuculty this doesnt indicate a primary health care need. However, if there are problems with the peg ie ongoing infections in the site, tube needing to be replaced more often than normal or someone is still being feb orally and there are diffuculties you would score higher in that domain on the decision support tool
Lets say MRS A has lost the ability to swallow and is being tube fed. She is unable to swallow, not because she is old, not because she just feels disinclined & not because she is suicidal. Its because she has a medical condition that prevents her from swallowing, either physically or mentally. Without the tube feeding she will die, no ifs, no buts. So, her medical condition means she will die without medical internevention ie nursing care. And yet, the DST dictates that this is social, not nursing care, simply because the tube feeding is being managed well. What happened to the term A MANAGED NEED IS STILL A NEED? Where does it all stop. Will we soon see the day when social services are going into our hospitals and looking after patients who are ill but are not receiving acute treatment.?
I do understand that this formula is not yours personally, but if you really believe in your comments, can you just have a little glimmer of understanding why we, as relatives, try to avoid social workers as much as we can? As for your advice about making sure that our relatives are asessed for CHC as soon as possible, well, in my case, my mums social worker NEVER EVEN INFORMED ME ABOUT nhscc. I "discovered " it accidentally after mum had spent 3 months in hospital and 2 yrs in a care home. During this time not one single SW, nurse, Dr, or manager told me about NHSCC.

monkeyspanner

Katykat wrote: »

As for your advice about making sure that our relatives are asessed for CHC as soon as possible, well, in my case, my mums social worker NEVER EVEN INFORMED ME ABOUT nhscc. I "discovered " it accidentally after mum had spent 3 months in hospital and 2 yrs in a care home. During this time not one single SW, nurse, Dr, or manager told me about NHSCC.

Your experience of "discovering" CHC funding is almost identical to ours. Luckily we stumbled across a reference to CHC funding after my MIL had been in a care home for about 3months when trying to understand her 12 week disregard financial assessment. When we raised the subject with my MIL's care manager she breezily says "Oh she isn't entitled to that she would need to be at deaths door to receive funding". The hospital had failed to carry out even an initial assessment for CHC prior to discharge. It took us a few weeks to track down the right PCT department because social services were blocking our request for information about how to arrange for an assessment and when we did it took months to get a first assessment.

Eventually we did achieve retrospective funding despite social services "assistance".

smilelols

Hi Katykat
I agree with that the decision support tool isnt the easiest document to naviagate yourself around and understanding the implications of each domain can be confusing (particulary in times of anxiety and distress when supporting people you care about).
My knowledge and understanding of continuing health care, the domains and the key indicators has come from my own experiance of working within the system.
My comments on this thread, had intended to be helpful for people looking at this process, as I am well aware of the lack of knowledge and experiance generally within professions such as social services who should know more about this subject. However despite my best efforts to share what I had hoped was useful explanations/comments I appear not to have been successful and seem to have become the focus of people's very natural unhappiness about the role social services had played (or not).
Given this I dont feel it would be appropraite for me to comment further on this thread as my understanding of the object of these threads is to share information and give support/advice etc but it appears that my comments are being used for people to direct their unhappiness at.
I sincerley hope that you all find the resolutions that you are looking for and the people that you care about are recieving all the support that they require.