Failure of the UK Government and NHS to consult with Disabled people.

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To: Simon Stevens, CEO NHS England and Matt Hancock, Secretary of State for Health and Social Care

The NHS and UK Government must consult with Disabled people when planning NHS and health policies.

The story so far...

Early in May, two Disabled people, Fleur Perry and Mark Williams had written separate letters to NHS England with the support of lawyers from Fry Law and Rook Irwin Sweeney.

These letters challenged the NHS England guidance on hospital visitors during the Coronavirus pandemic which said that, with a few exceptions, patients cannot have visitors.

Although the guidance rightly allowed some people people with learning difficulties, autistic people or people who experience mental distress to have support from someone familiar to them, other Disabled people could not.

Disabled people who need support from personal assistants (PAs) felt that this policy discriminated against them. This includes people with communication and other support needs that cannot be met by NHS staff. The letters explained that, without support from someone that knows them well, their needs and wishes would not be met, which might lead to a breach of their human rights.

Many disabled people and their families felt very relieved when NHS England accepted the letters and agreed to update the visitor guidance by the end of May 2020, to allow Disabled people to have a PA if they have to go into hospital as an in-patient.

The new NHS guidance was published late, on 5 June 2020.

NHS England did not tell disabled people, families, GPs or hospitals about what would be in the new guidance.

Although we are pleased that NHS England have said that Personal Assistants and carers may now visit disabled people if they need to go into hospital, the guidance is still not clear enough.

●     The Guidance says Disabled people ‘may’ have support - but this is at the hospital's 'discretion' - not a right to support.

●     People may have ‘visitors’, but some Disabled people need support all the time they are in hospital, not just at ‘visiting’ times.

●     Disabled people may have support if it is ‘appropriate’ or ‘necessary’, but the guidance does not say who decides.

●     ‘Virtual visits’ might meet people’s needs, for example video calls, but this is not ‘appropriate’ or ‘necessary’ if you have a PA or carer who can support you.

●     The guidance does not explain how PAs and carers will be provided with PPE (Personal Protective Equipment)

We feel that they have got this guidance (and many other policies) wrong because they did not properly involve and consult with disabled people, or our organisations and families.

We had asked that NHS England consult with us about this guidance. However, they are now saying they do not need to consult with us, which we feel is a potential breach of the law.

For example, the Equality Act's Public Sector Equality Duty requires due regard to be given to the needs of disabled people. Not being consulted with feels like being disregarded.

Also, the UN Convention on the Rights of People with Disabilities (UNCRPD) says that governments must ‘closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organisations’.

As Disabled people, we have always argued that if we are consulted before policies are made, it would save time and money for everyone. During the pandemic, disabled people have largely been ignored and forgotten. The Coronavirus Act has been rushed in without any consultation, meaning many rights of disabled people have been destroyed overnight after more than 30 years of campaigning.

The Disability Union and Bristol Reclaiming Independent Living (BRIL) and others in the Disability Movement are asking people to sign this petition, to make sure that disabled people’s rights do not take a backward step and that we are always consulted before decisions are made that can drastically alter our lives.

(If you would like this petition in a different format or in EasyRead please email BRIL: 

Please sign and share this petition. Thank you.