That time when the NHS deleted the right to Independent Living and we didn’t notice

Guest post from Fleur Perry. NHS Commissioners have authorised policies that could lead to Disabled people being permanently removed from their homes against their will. Could you help directly take on your local CCG in the courts to ensure that this never happens again?

Portrait of Fleur Perry

This is a guest post by Fleur Perry, Disability United

We all knew that there were problems to be addressed before everyone could exercise their right to live independently, but over on Disability United, we’ve uncovered a set of people who don’t believe that right exists. Unfortunately, these people are NHS Commissioners, some of whom have authorised policies that could lead to disabled people being permanently removed from their homes against their will. For some, this may have already happened.

Back in the autumn, Southampton CCG were heavily criticised for limiting care funding for people in their own homes to 8 hours per day. Anyone who needed more care that that would only be able to receive funding to live in a care home.

The question was: Where else is this happening? The answer: at least 44 areas of the country have a policy of this type. That’s 83% of CCGs who responded to our FOI request with a local policy.

Some commentators have blamed Brexit, and whilst we’re still waiting to know the full consequences of the vote to leave the European Union, I’m sorry to report that this has been happening unnoticed for some time. Some of these “policies of concern”, as I would politely call them, have been in use since 2013. I wish I’d looked at this sooner.

This could very well be a breach of the United Nations Convention on the Rights of Persons with Disabilities and a breach of our very own Human Rights Act. These important documents were written to protect us from something like this. We need to use these documents to hold the people who wrote these 44 policies to account.

Putting aside the legislation for a moment, this is a very scary finding for anyone who has a need for care and support, or may do in the future. I’m certain if the boot was on the other foot the Commissioners would be in uproar. This is not something I want to see spreading to the rest of the country’s 212 CCGs. It would be a huge step back for the disabled people’s movement as a whole, and could have a devastating impact on a large number of individuals.

Since we published our data, the response we’ve received has been extraordinary. Messages of support, a small twitter tornado, media enquiries and personal stories have been flooding in. Keep them coming. To change these ghastly statistics, we need 2 things.

We need to build more public and political support, anyone who wants this to change, to take that message and spread it far and wide. We need that message to reach the desks of the people who made these silly decisions in the first place, to ask them to change these policies; to stop people being put into care homes against their will.

We need somebody who has been affected by such a policy to directly take on their local CCG in the courts. A successful legal challenge would end the argument and would ensure that this never happens again. It would be lengthy, it would be exhausting, and there’s no guarantee you would win. It’s a lot to ask, but I wouldn’t be typing this if it wasn’t important. There are people ready and waiting to support you to do this. It’s not easy, and it’s not a decision to be taken lightly. But if you do want to know more about what would be involved, please get in touch with Disability United, Inclusion London, or Disabled People Against Cuts, and we’ll do our best to answer your questions.

This shouldn’t be happening in 2017, but it is. What’s important is what happens next, and we’ll do our best to keep you updated, and to do what we can to change this. This time next year, I will write another blog, and I hope it won’t be as hard to write as this one.


More information on Fleur Perry’s research can be found here:

Disability News Service: Department of Health ignores NHS continuing healthcare human rights warnings
Disability United: NHS Staff Can Decide Where Disabled People Live, Even Against Their Choice