CHC (Continuing Healthcare) support thread

[nitram]

Just to add a bit about stanleypj's CCG and LA working together.

He lives in Greater Manchester and since 01/04/16 both the health and social care budgets have been combined into one budget now controlled by the Association of Greater Manchester Authorities (AGMA).

It is known as Devolution in Manchester (Devo Manc)

"Responsibility for the £6 billion combined budget for health and social care was devolved to Greater Manchester Combined Authority at the start of April 2016. Legal responsibility sits with the Chief Officer."

http://www.bma.org.uk/working-for-change/doctors-in-the-nhs/devomanc

Hopefully all residents of Greater Manchester will see a uniform and improved approach and service.

Complaints about an LA and the NHS appearing to be not working together will be easier to make.

 

[stanleypj]

Thanks for that nitram - very helpful.

 

[AlsoConfused]

Our CCG is regarded as a pioneering one

I read that and thought Heaven help you!!!

 

[stanleypj]

I read that and thought Heaven help you!!!

I understand and I do have some scepticism about the hype and the motivation of some of the key figures involved. However there will be a lot of scrutiny of how it is working (or not) and this is likely to be an added incentive to get things right

 

[bemused1]

In the current financial climate and with consequential staff cuts a delay like this may not be unusual.

We had a bit of a wait before the multidisciplinary team meeting was arranged and the letter informing us that it was happening included the sentence 'Unfortunately this assessment will not be completed in the timeframe as per the National Framework due to staffing issues.'

It doesn't do any harm to keep pestering, but as I've said I know how hard it can be to find the tine for this.

Thanks Stanley I'll push it to the back of my mind again. Since our ccg is in special measures and several millions in the red I am not surprised we haven't heard anything at all.

 

[JTK]

Upcoming Changes to the National Framework

I understand HM Government, under the auspices of HM Principal Secretary of State for Health, has invited England's clinical commissioning groups to revise the National Framework again. The revised National Framework is scheduled to come into force in the "nearish future."

Of course stakeholders and other interested will be consulted and their views "considered" on any changes to the guidance by which NHS Continuing Healthcare is decided.

However, the cynic in me thinks the reality will be a new guidance document, and decision support tool, which will attempt to make even more people who according to the law would be considered to have a primary health need so that HM Government and the CCGs can reduce significantly their current NHS CHC annual spend of £2.5 - £3 billion.

How much more absurd will the domain scores become after the CCGs have "reimagined" the decision support tool and National Framework?

 

[stanleypj]

Thanks JTK. Where did you find this? Just wondering how firm the intention may be and whether any kind of time frame has been suggested.

 

[nitram]

"How much more absurd will the domain scores become after the CCGs have "reimagined" the decision support tool and National Framework?"

If they follow Scotland there will not be any domains to score.

http://forum.alzheimers.org.uk/show...-2015-Help!!&p=1182021&viewfull=1#post1182021

 

[Spiro]

Has anyone come across a situation where only certain care homes will accept new residents who are getting CHC? They can only go to a home which has a contract with the CCG.

 

[nitram]

No experience but it is a common observation.

For 'contract with the CCG' read 'accept residents at a reduced fee.'

If a care home can fill most of it's places with self funders who could be paying up to twice the CCG tariff there is little financial incentive for them to accept CCG residents who are likely to have greater needs than most residents. They can't increase fees charged to the CCG as they can for self funders.

 

[JTK]

Thanks JTK. Where did you find this? Just wondering how firm the intention may be and whether any kind of time frame has been suggested.

Hello Stanleypj

I spoke to a lawyer a week or so ago who is an expert in this area of the law who told me that revision of the National Framework by the CCGs is taking place..

The National Framework IS being revised.

As for the timeframe for implementation the lawyer couldn't say. I suspect that that will depend on HM Government and HM Secretary of State for Health resolving the issues they have with the junior doctors and implementing their manifesto commitment to a 7 day NHS. Oh, and also on how long/short the consultation will be with other stakeholders/interested parties and whether HM Government/HM Secretary of State for Health decide to take on board any concerns raised by stakeholders/interested parties, or allow the CCGs to revise the National Framework as they see fit.

 

[sleepless]

I have limited experience of applying for CHC, but when I requested a checklist etc for my dad recently I soon discovered that a lot of the 'guidance' for the layman is hardly worth reading, as the powers that be can interpret it to their own convenience. I realise that the Framework is possibly more rigid, but when Age UK, RRA, and even Beacon told me repeatedly that the CCG were going about it the wrong way, and I should insist they follow the written word, I was told that 'this is how we always do it.'
My husband is now due to be assessed, but I do not have the time to waste going down blind alleys, and no time to devote to the paperwork, so will just leave it to others. Whether or not he gets CHC seems to be a lottery anyway. I do not feel at all strong enough mentally to take on the task, so am trying not to dwell on it quite frankly. Others I have heard of by word of mouth seem to have been granted CHC almost without realising it exists -- what a stress-free gift was that!

 

[stanleypj]

I can fully understand your feelings about this sleepless. Preparing for a DST meeting is daunting, especially when you are dealing with a CCG that appears to be flagrantly disregarding the guidance. If we weren't carers, we would have no problem challenging them. All I would suggest is that you continue to flag up on this thread any further concerns about the CCG's deficiencies as there are people on here who may be able to suggest ways of dealing with them.

 

[jaymor]

Sleepless I was one of those who got it without realising.

My husband after three horrendous crises was admitted to an assessment unit. He was not sectioned.

He was granted CHC with 1:1 care 24 hours a day. He received the care for the whole 4 years he was in care until he died 5 weeks ago. His health care did outweigh his care needs and his health issues all came from having Alzheimers.

We were asked to attend a meeting where five professionals involved in his care were present. We were asked our opinions as to how we saw him and at the end of the meeting we were told his notes would go before the panel. I had no idea what this panel was and when I asked they explained they had just gone through a check list that indicated that my husband should qualify for CHC. Less than two weeks later we got the phone call to say he did.

He had Akzheimers for 11 years, seven years at home and 4 years in a nursing home.

I don't think we are in an area where it is a walk over, I know of quite a few people who have been turned down.

I hope our experience will give hope to some who are about to start the process.

 

[sleepless]

Sleepless I was one of those who got it without realising.

My husband after three horrendous crises was admitted to an assessment unit. He was not sectioned.

He was granted CHC with 1:1 care 24 hours a day. He received the care for the whole 4 years he was in care until he died 5 weeks ago. His health care did outweigh his care needs and his health issues all came from having Alzheimers.

We were asked to attend a meeting where five professionals involved in his care were present. We were asked our opinions as to how we saw him and at the end of the meeting we were told his notes would go before the panel. I had no idea what this panel was and when I asked they explained they had just gone through a check list that indicated that my husband should qualify for CHC. Less than two weeks later we got the phone call to say he did.

He had Akzheimers for 11 years, seven years at home and 4 years in a nursing home.

I don't think we are in an area where it is a walk over, I know of quite a few people who have been turned down.

I hope our experience will give hope to some who are about to start the process.

Thank you stanley, and jaymor. My husband is in his fourteenth year since diagnosis and still at home. I think that because I am his wife, and love him dearly, I perhaps underestimate the amount of care I give him, whereas the district nurse sees it more, and thinks it should qualify for CHC. But the care I give him comes first for me, and does not leave me the time or mental energy to diligently prepare for and fight for the funding. I greatly admire those who do it though.
Just wish we didn't have to jump through hoops all the time to look after our loved ones who are after all dying from a cruel and incurable disease.

 

[jaymor]

Sleepless just go for it. I did nothing, I did not even know what they were actually doing. I thought it was just going through how they saw him from their observations of his behaviour whilst in the unit and to talk about any changes in medication they thought would help him to return home.

My husband needed the care, he got the care.

Take the District Nurse's advice and start the ball rolling.

 

[sleepless]

Sleepless just go for it. I did nothing, I did not even know what they were actually doing. I thought it was just going through how they saw him from their observations of his behaviour whilst in the unit and to talk about any changes in medication they thought would help him to return home.

My husband needed the care, he got the care.

Take the District Nurse's advice and start the ball rolling.

Sorry if I haven't made it clear -- the district nurse has started the ball rolling, (she did the checklist) and I am just letting it roll! ie. she will take the lead at the meeting, I just have to be there with my own observations I think. She has reassured me that I do not need to prepare any paperwork etc. so I hope she is right. I am glad your late husband was awarded the funding, jaymor, and that it was not a stressful process for you.

 

[jaymor]

That's good, I have my fingers crossed for a good outcome for you.

 

[stanleypj]

Sorry if I haven't made it clear -- the district nurse has started the ball rolling, (she did the checklist) and I am just letting it roll! ie. she will take the lead at the meeting, I just have to be there with my own observations I think. She has reassured me that I do not need to prepare any paperwork etc. so I hope she is right. I am glad your late husband was awarded the funding, jaymor, and that it was not a stressful process for you.

That's just how ours started Sleepless. The DN did the checklist and I didn't really appreciate at that point what a big deal it might be. The DN will be a great asset in the meeting I would think.

 

[stanleypj]

As people have suggested this thread has now been made a sticky which should help to draw it to the attention of people looking for support and others who may be able to provide it.