Row erupts over claim service users have little control of national forum

A campaign group has claimed that a national forum set up to give people with learning difficulties a say in government policy is not user-led.

National user-led learning difficulties group People First (Self Advocacy) held a protest in London last week claiming that the National Forum for People with Learning Difficulties and its regional branches were controlled by people without learning difficulties.

But the forum’s co-chair, Karen Flood, who has learning difficulties, has defended it.

People First also said that, although forum co-ordinators and members’ support workers were paid for their work, members themselves, who have learning difficulties, were not.

It also claimed that only those who could guarantee they would have the same support worker for the next two years were allowed to stand for election to the forum, which it described as patronising and unrealistic.

It called for the forum to be run in the same way as Equality 2025, the UK’s advisory network on disability equality, whose group members are appointed as advisers and paid.

Director Andrew Lee said: “It’s not the forums we have an issue with, it’s the system that they have to follow, which is apparently laid down by the Department of Health. We are calling for the whole system to be changed.”

But national forum co-chair Karen Flood said members would not want to be paid because it would interfere with their benefits and most took part for the privilege of representing people with learning difficulties.

The Department of Health said it did not pay forum members as it ensured they gave their views freely.

Flood said the co-ordinating agency, Centrevents, organised the practicalities of the meetings but did not do anything without the chair’s permission. She denied members had to have the same supporter for two years.

What the national forum does
The forum was announced in the 2001 Valuing People white paper and set up in the same year to involve people with learning difficulties in monitoring the impact of the white paper. Most are elected by the regional forums, with other places reserved for ethnic minority members, those with higher support needs and representatives of national bodies.

Read more on this story in Community Care’s learning difficulty blog
“The National Forum has always been vulnerable.” says Andrew Holman in his blog entry on the People First/National Forum row. Andrew Holman works for Inspired Services as a consultant in social care, working with people with learning difficulties.

Contact the author
  Simeon Brody