Continuing Healthcare Cost Capping Calamity – the Saga Continues

2017 was never going to be a quiet year, but the response to January’s article, NHS Staff Can Decide Where Disabled People Live, Even Against Their Choice, was like nothing we’d dreamed of…

Analysis of responses to Freedom of Information requests made to 212 Clinical Commissioning Groups found that it was worryingly common for disabled people receiving day to day support funded by NHS Continuing Healthcare to be faced with being moved into a residential setting against their will on the basis of cost alone.

We were not best pleased about this, and neither were you. The original article stormed social media, and the story quickly went mainstream in print, online, on radio and television. We were amazed and extremely grateful for the emails, tweets and shares of support from our fantastic fans, charities, small organisations, big Disabled People’s Organisations, lawyers, watchdogs and even the odd sneaky NHS employee or 2.

But we wanted to make sure our message got through to those who make the decisions. Imagine if they’d all somehow missed the media megaphone? So we emailed every single CCG we were concerned about. Here’s what the email said:

To whom it may concern

Recently on Disability United, we published an article on Continuing Healthcare funding. It is available here:

It was then featured on the Disability News Service website, HSJ, the Guardian, the Telegraph, the Times, the Sun, the Mirror, the Mail, Private Eye and LBC radio.

I’m sorry to have to write this, however, your CCG was one of those we have grave concerns about.

If somebody in your area is moved away from their home against their will and they contact us for help, please be advised that we would consider it our duty to connect them to legal advice and other support.

We’d rather it didn’t come to that, as it would be a lengthy and costly experience for all involved, and we’re sure you will agree that there must be a better way to resolve this.

We’d like to work with you to resolve this situation.

Please get in touch with us at at your earliest convenience.

Yours faithfully

Fleur Perry

Disability United

It might seem strange that we would offer to help organisations who are at the centre of a Human Rights question, but what we want is change. The best way we can think of to make this happen is to get everyone around the same table, grab the tea and biscuits, and share ideas and swap viewpoints and work together find a next step. It won’t be easy, it won’t be quick, and it won’t be exciting, but that’s what we think we need to do to change the situation and so that’s exactly what we’re going to do.

Replies and non-replies:
We had 2 responses to that email. The first was from Medway CCG, correcting our information. The FOI response from NHS Kent and Medway was mistook to refer to Medway CCG, when it actually referred to NHS Hastings & Rother CCG, NHS Eastbourne, Hailsham & Seaford CCG and NHS High Weald Lewes Havens CCG. We apologised for the error and have corrected our database accordingly.

Database available here: CCG CHC policies v2

The scores on the doors at present are:

FOIs sent to: 212
Replies received from: 125
Number using their own policy instead of the National Framework: 55
Number with policies which containing phrases that could be considered concerning: 45

These figures are very disheartening, however being able to measure the scale of a problem gives us a starting point for change.

And there is hope. The second email was from a CCG who wants to open a discussion. We won’t name them here, as we’re really glad they got in touch and are looking forward to talking to them. There’s a date in the diary, and we’ll let you all know how it goes.

We will name and shame those who didn’t reply, and we’d be very grateful if you could tweet or email your CCG for us and ask them to get in touch. Here’s the list:

NHS Basildon and Brentwood CCG
NHS Bedfordshire CCG
NHS Birmingham CrossCity CCG
NHS Blackpool CCG
NHS Bristol CCG
NHS Cambridgeshire and Peterborough CCG
NHS Camden CCG
NHS Central Manchester CCG
NHS Coastal West Sussex CCG
NHS Dorset CCG
NHS East Leicestershire and Rutland CCG
NHS East Surrey CCG
NHS Eastbourne, Hailsham & Seaford CCG
NHS Fareham and Gosport CCG
NHS Great Yarmouth & Waveney CCG
NHS Guildford and Waverley CCG
NHS Haringey CCG
NHS Hastings & Rother CCG
NHS Herefordshire CCG
NHS Herts Valleys CCG
NHS Heywood, Middleton & Rochdale CCG
NHS High Weald Lewes Havens CCG
NHS Kingston CCG
NHS Leicester City CCG
NHS Liverpool CCG
NHS Medway CCG
NHS North East Hampshire and Farnham CCG
NHS North Hampshire CCG
NHS North Manchester CCG
NHS North West Surrey CCG
NHS North, East, West Devon CCG
NHS Redditch and Bromsgrove CCG
NHS Somerset CCG
NHS South Devon and Torbay CCG
NHS South Manchester CCG
NHS South Worcestershire CCG
NHS Surrey Heath CCG
NHS Vale Royal CCG
NHS Warrington CCG
NHS West Cheshire CCG
NHS West Leicestershire CCG
NHS Wirral CCG
NHS Wolverhampton CCG
NHS Wyre Forest CCG

We were also sent word that Leicestershire and Rutland CCG were considering lowering their CHC cap, which would further reduce choice of where to live for people in Leicestershire and Rutland. The Spinal Injuries Association have a petition against the lowering of the cap, available to sign here:

Legal questions:
One of the people who got in touch after the media coverage was Belinda Schwehr, a lawyer with a lot of patience for our questions. In this time of seemingly endless cut-backs, Belinda makes the case that we need to all need to brush up on our “legal literacy”.

To give us a crash course on Human Rights law, social care law, and case history that might be relevant, Belinda presented a free online webinar that answered a lot of our questions. The webinar is now available to view for a fee on and all proceeds will go to support the start-up and running of a charity offering free legal advice, CASCAIDr. There is a discount code available for Not For Profit organisations; just email with some information that identifies who you are and where you work and we’ll reply with the code and instructions.

The Human Rights Act doesn’t state that no interference in a person’s private and family life is lawful, but that it must be justified.

Therefore, if a CCG is making arrangements to move you away from your home just to save money, and they haven’t done the following, we recommend you seek professional legal advice:

– assessed what the effects of doing this would be on your physical and mental health.
– assessed the impact on family and friends who support you and who you support.
– calculated the cost of you staying where you want to be.
– checked availability of local placements that would meet your health needs. Capping costs at a level that wouldn’t be safe in practice would be arbitrary instead of evidence based.

If they haven’t done some or all of these things, you might be the perfect person for a test case. There has never been a case like this taken through the legal system: somebody reading this right now could be the first. Belinda Schwehr has even gone as far as to say it would be “the most juicy and important test case issue of our time”. Email if you want to make history.

We need your help!:
If this has happened or is happening to you, but you don’t want to be named or be a test case, you could send us your story to be published or discussed without your name. The more we can show the CCGs the effects of their decisions, the more chance we have of persuading them to stop cost capping.

Disabled People’s Organisations and small support organisations: anonymous case studies needed from you too please.

Thank you again for all your support

By Fleur Perry
Disability United

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