/ Health

We must be told about crucial changes to NHS care funding

If you’re struggling to pay healthcare costs for a seriously ill relative, the NHS can offer funding to help. However, if you didn’t know about this funding and need to apply retrospectively, you could soon lose out.

The NHS offers funding to some people who have ongoing healthcare needs – people who are seriously ill and need daily care, for example.

People who are eligible have their full healthcare costs funded by the NHS – whether they live in their own home or in a care home, and whatever their financial situation. At a possible £1,000 a week, it’s a lifechanging sum of money.

Last year, we exposed the huge nationwide variations in whether the NHS pays the full cost for people with the highest, most complex needs. But there’s a further twist in the tale…

Funding can be hard to come by

Back then, David Bury told us how his family was struggling to retrospectively get more than £100,000 for his mum’s care between 2003 and 2006. Five years on, they won the fight. But if they had made the claim after September this year, they may not have been so lucky.

The Department of Health has announced that, from 30 September, it will be closing down claims for care costs incurred between 1 April 2004 and 31 March 2011. This means that people who aren’t told they can claim before this deadline could miss out on thousands of pounds of funding they’re entitled to.

Last year many of you wrote to us about your experiences of trying to access continuing care, and the lack of information was a recurring theme. If they don’t know it exists, people can’t apply for the support they need at the time. In these cases, their only option is to make a ‘retrospective’ application.

Is there enough information?

A month ago the Department of Health sent a memo to primary care trusts (PCTs), telling them to raise awareness of the changes. However, it doesn’t feel like much has changed – have you seen any advertisements explaining these changes in your local area, or on PCT websites?

And – as someone with a friend whose mum gets continuing care funding because of her severe dementia, and had to fight for it as well as cope with a stressful situation – it seems to me that this is a bit like kicking someone when they’re already down.

With PCTs due to be disbanded under NHS reforms, there’s also a worry that more local commissioning could mean the postcode lottery for continuing healthcare will get even worse.

Have you tried to apply for continuing care funding? How do you think the Department of Health could help raise awareness of the changes made to these applications?

Danielle says:
16 July 2012


Could someone please help. I am aware that an application retrospective claims for the period 1 April 2004 and 31 March 2011 needs to be made by September 2012. What constitutes an application?

Ask your NHS contact if a Continuing Health Care Assessment has ever been undertaken for the person concerned; or make contact with the relevant NHS Primary Care Trust Continuing Care Department. If no such Assessment has ever been carried out you need to request a Retrospective appeal claim from the NHS PCT or the NHS Strategic Health Authority. Make sure you post your correspondence using signed for delivery or deliver by hand. See also: http://cachca.forumotion.co.uk/ – excellent advice on offer there .
Good luck.

Stephen Squires says:
16 July 2012

The above ‘Anonymous’ post misses the point! The NHS frequently neglect to follow their own guidelines – the ‘National Framework’ issued by the DoH. An assessment for NHS continuing care MUST be preceeded by an MDA (Multi-Disciplinary Assessment) the purpose of which is to determine what ongoing care the patient requires and where and by whom it can best be provided. Until this is completed a continuing care decision obviously cannot be made. You should therefore ask for a copy of their MDA – and if they didn’t bother to do one THIS is your starting point – they can do this retrospectively and you can argue the validity of their decision as they frequently get it all wrong! Steve.

Jayne says:
16 July 2012

‘Anonymous’ gives you correct advice – to contact the relevant Primary Care Trust, in particular the Continuing Healthcare Department and/or the Lead of that CHC Department, firstly to ascertain whether a full assessment for CHC has ever been carried out. That should have been done with full involvement of family/PoA/next-of-kin etc, but if it has never been done, you can request it now.

Stephen Squires, however, misses the point. The first stage of the whole CHC process is that consideration of CHC must be given whenever a person’s needs change, so that time could be just prior to discharge from hospital, or after a period of rehab/intermediate care has been gone through and prior to admission to a care home on a full-time/long-term basis, or when a person’s health and social care needs are subject to a review as part of a community care assessment. It could also be if someone is already in a care home but their mental or physical condition has deteriorated and the package of care they are in receipt of is now seen to be inadequate. Or if someone has a rapidly deteriorating condition that makes them more dependent and if they are approaching the end of their life.

The first stage is the ‘Checklist’ carried out to determine whether a full assessment for Continuing Healthcare – via the ‘Decision Support Tool’ (DST) – should be carried out. That Checklist is not required to be carried out by a full MDA (Multi-Disciplinary Assessment). If someone’s health is rapidly declining and they are approaching the end of their life, the assessment could be via the Fast-track tool.

It is only at the DST stage that a full Multi-Disciplinary Assessment is required to be carried out – again, with full consent of a patient/resident if appropriate, plus full involvement of his/her family or PoA etc. That MDA will involve contributions from both health and social care professionals who are or who have been involved in the patient/resident’s care and who have knowledge of his/her needs.

Each stage can be challenged by the patient/resident or his supporters.

Third eye says:
16 July 2012

[This comment has been removed at the request of the user. Thanks, mods.]

the other eye says:
16 July 2012

@ third eye

That is a bit strong, we all know Steve Squires has got some things wrong over the last couple of years, but he has helped a lot of people in his time (prime) have some respect for that, remember you can be traced, so be carefull of making derogative remarks you may land up with a law suit

Good intentions meant, nothing personal

The other eye

My advice would be to understand just how vulnerable the NHS & Local Authorities make us feel in situations concerning Continuing Health Care Claims. There can come a time when a person’s advice is so so important to your own self preservation that you trust them implicitly. The person giving that advice – should recognise when their advice has become outdated and no longer achieving the aim. To do otherwise is self indulgent and extremely harmful. The subject is very emotive and I can fully understand derogative remarks if they reflect your own experience – it’s really important others have their eyes opened to the possible pitfalls.

Jayne says:
17 July 2012

The other eye – what did I write that upset you?

Stephen Squires says:
18 July 2012

I would be very interested to learn exactly what ‘we all know’ that I have ‘got wrong’ over the last couple of years! Plus who are ‘we’ ? I have been providing information and advice for nhs continuing care claimants for the past 15 years or more since I won my late father’s case. I have always taken meticulous care to ensure that this is based not on my personal opinion but on material readily available in the public domain. Thus the information I provided above is contained in the ‘National Framework’ and appears in various Local Government’ publications as it originated in ‘delayed discharges’ legislation. This particular question has been visited several times in my ‘free nursing care’ forum. Steve.

Dear Stephen,
A word of support from someone who has learnt the hard way, which you obviously have, please ignore the rantings of so called do gooders, we both know that most of them really haven’t a clue and look upon life with rosy glasses.
They obviously do not understand what it is like to have to earn ones living and therefore they have to belittle people like yourself by finding petty faults, keep up the good work, believe me you are needed to fight the good fight against the Hypocrasy of the system and the Public officials running it
Just learnt some interesting figures last week : Yearly Budget for NHS £121 Billion Pounds yearly budget Social Care £8 Billion Pounds cost to taye payer for one week in a ward situation
approx £3200 cost to the rate payer in a care home per week in single room accomodation with Nursing and care support matching (at least) the NHS £500 per week. I have being trying for years to get a satisfactory explanation from the PCTs why they allow placements to the Trusts and cause “BED Blocking etc. when there there is an obvious alternative which I can absolutely Gaurentee the Public supportss (450,000 fee paying clients cannot all be wrong)

Jayne says:
17 July 2012

The other eye – ignore my question above. I have just been informed that the post to which you were referring (the one by Third eye) has been deleted – it wasn’t there before, so your comment didn’t make sense below my careful explanation of CHC.

Jayne says:
19 July 2012

Mr Squires, I am not a member of your forum and I have no wish to join, so perhaps you will allow me to comment on your statements made here. You appear to be shouting, with your use of capital letters and exclamation marks, but I would still like to correct you on one or two matters, if I may.

Firstly, you have your dates wrong when quoting Lord Hunt of Kings Heath in the House of Lords, so you need to verify your information.

Secondly, Lord Hunt of Kings Heath was talking about the dispute situation that could arise if a local authority was of the opinion that the patient did indeed require continuing services from the NHS, rather than services which a local authority could provide lawfully. (Namely after the issue of a Section 2 notification.) So in circumstances where a local authority was unwilling to accept responsibility for a patient via that Section 2 notification, the local authority could enter into dispute with the NHS.

That formed a very large part of the Community Care Delayed Discharges Bill and Act as passed, because the Act required the creation of panels to be responsible for the resolution of disputes between two authorities/bodies, e.g. NHS and local authority.

That is nothing to do with a patient disputing the decision that she/he is not eligible for NHS funded continuing healthcare. There is a completely separate and different appeals procedure for situations where a patient is in dispute with the NHS over the decision made, and a patient who is no longer needing hospital care does not have the right to remain in hospital.

1 relative 2 another – I agree. Some vulnerable people are being hit with a double whammy – needing help, seeking advice from a person “who knows”, getting in deep water, left hi & dry.

Hello all, we’ve taken some comments down because they don’t follow our Commenting Guidelines. Please be careful when being critical of others – read more in our Commenting Guidelines: https://conversation.which.co.uk/commenting-guidelines.

Relative says:
25 July 2012

Can I ask why Which is allowing Stephen Squires to advertise his advocacy business through this comment thread? Which rules specifically say that people should not advertise businesses. Seems rather strange that he can do this and yet his clients are not allowed to criticise it.

[This comment has been edited for breaking our community guidelines. Thanks, mods.]

Hello Relative, it is regrettable to have to remove comments – please just try and stick to our commenting guidelines. We have also previously removed links to website’s from their owners as you’re correct in that we don’t allow self-promotional links. Thanks.

3 April 2013

My wife receives NHS continuing healthcare which has been funded over the past 6 years by the PCT Does anyone know how this will funded after the abolition of the PCT’s under the NHS reforms and is there anything I need to do on her behalf to ensure continuity ?

Stephen Squires says:
12 June 2013

Don’t worry – your wife will continue to be funded via. the CCG – Care Commissioning Group –
which replaced the old PCT. Same people, same address – just different hats! My free nursing care forum gives full details – but they won’t publish a link here! Steve.

Hi, you may have noted some of your comments have been taken down. This is temporary, however, they break our commenting guidelines. This is because they are either rude to other commenters, or they make accusations about other individuals. We will be going through the comments to see if they can go up again, possibly in an edited form.

Please take note of our guidelines before making any further comments: https://conversation.which.co.uk/commenting-guidelines

I’m afraid many of the comments we took down will not be able to go back up. If there are further infringements of our T&Cs and commenting guidelines, we may have to close this thread to comments. Thanks.

The Other Eye says:
14 June 2013

please ignore the rantings of so called do gooders, we both know that most of them really haven’t a clue and look upon life with rosy glasses.
They obviously do not understand what it is like to have to earn ones living


So you don’t think that the above words By Gerald, Are in any way insulting to other commenters Here

Who work hard for their living, and pointing out the pit falls in our downtrodden lives

Gerald says:
3 October 2013

Dear Third eye
My comments were not directed at you, I am amazed that you have taken them personally, I thought you actually supported Stephen , I was only trying to encourage Stephen to continue his good work as there are so very few people taking the trouble of helping others to fight for justice against such powerful Authorities such as the NHS and the County Councils.

I am sure Stephen is not perfect but he is ,in my opinion, doing a good job and needs to be appluaded not denegrated for his efforts.

Bye the way I do not really know the man, I only go on what other people say and by looking at his track record,

Hello everyone, we’ve had to again remove comments for breaking our guidelines and T&Cs. Due to this and repeated warnings I am regrettably closing this thread to new comments.

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