I N C O N V E R S A T I O N

Joan Scott and Brian White

Andrew Holman, Community Living, Old St Mary’s School, Fitzroy Street, Newmarket, CB8 0WH, UK

(E-mail: andrew@communityliving.org.uk)

Moving into 2004 brings with it a number of milestones

regarding the implementation of Valuing People. The

National Forum of people with learning difficulties has a

whole new set of regionally elected representatives; the

Valuing People Support team has been given extra time to

pursue their implementation programme; the Department

of Health faces yet another reorganization with officers in

the policy department having to reapply for their jobs; Local

Authorities face continued uncertainty about their future

roles and responsibilities and the drop in the little national

funding that was available for self-advocacy groups, to

name but a few.

Tony Blair gave Valuing People a strong start in life with

his recognition of the problems people with learning

difficulties face in society, but the profile of learning

disability services is always low on any Government agenda

and despite the initial push it may be inevitable that it can

only slip down again as time goes on. I wanted to talk to

someone who would be able to give a much more personal

perspective both on achievements so far and worries about

the future.

I was fortunate, therefore, to be able to meet up with two

people who not only use services themselves but who are

also particularly well placed to comment from the perspec-

tive of other people with learning difficulties as to how the

changes Blair promised have fared.

Joan Scott has co-chaired the National Forum with Brian

White for the last 2 years. Brian has been an active member

of his local self-advocacy group for many years and has

always taken a keen interest in politics. Amongst other

work, Joan is on her local Partnership Board and president

of a People First group. She has just completed a project

for the National Care Standards Commission (NCSC)

developing their cross client group accessible information

strategy. Joining forces once again with Brian, they have

somehow managed to make time to set up Action

Unlimited, a new company run by and for people with

learning difficulties that specializes in supporting self-

advocacy in hard to reach places, as well as helping make

information easier to understand and other consultative

services.

I met Joan and Brian at a meeting of Action Unlimited and

took them back to their early involvement with the National

Forum. For Joan, this was initially a lack of involvement;

People First of Norfolk had been unhappy that they were

not involved in the national debate and complained. The

Forum was glad to offer them a seat at the table, a position

that was confirmed when Joan was elected from her region.

As a born and bred Geordie, Brian had been asked to

represent his north-east region. He remembers being very

aware that ‘as a group, we are one of the most vulnerable in

society, yet for so long we just get the crumbs from the rich

man’s table’. Brian comes from a sceptical starting point,

often pointing out the mis-match in Government spending

priorities and the lack of attention paid to people with

learning difficulties. He does say that this has helped the

Forum keep their eye on the political agenda and ‘not be

bought off with small concessions.’

The National Forum’s achievements are many. Joan talks

about her role as a prominent member of the interview

panel that appointed Rob Greig as the manager of the

Valuing People Support Team, ‘the Department of Health

wanted us (people with learning difficulties) to have

separate interviews with the people applying, and then

pass on our recommendations to the civil servants’ inter-

view the next day, we said that was not the right way to go

about it, we did do our own interviews, we decided on the

best person and then said we should also be involved the

52 ª 2004 BILD Publications, British Journal of Learning Disabilities, 32, 52–53

next day on the main interviews as well. To give them their

due, they agreed and this has been the practice ever since.’

Somewhat grudgingly, Joan said she thinks that Greig’s

Support Team ‘seem to be OK’, but was not convinced they

have delivered enough. She gave the closure of hospitals as

an example, ‘the hospitals were meant to be closed by now,

everybody knew they were meant to be closed, but it is now

going to go on for a couple more years. This will mean many

people still living in run down places for longer than they

need to. I feel very strongly they haven’t made the proper

arrangements for people to get out into proper houses,

especially as they just seem to be starting some of this work

now.’

Brian and Joan have worked alongside the TaskForce on

many issues. Joan led a deputation to Lord Falconer, then

Secretary of State at the Home Office that led to the Forum

being invited to hear an immediate acknowledgement of

their concerns in a House of Lords debate on the Bill and

subsequent changes to the Sexual Offences Act regarding

levels of consent. Brian said ‘people need to be safe from

abuse, there is a delicate line between abuse and freedom’

and both were equally adamant that ‘peoples’ right to a sex

life must be supported.’

They pointed out that many services and supports are still

not available to everyone. Joan said ‘it is bad that some

people with higher support needs are still not able to get

Direct Payments because of the law on consent, they need it

more than anyone’. Brian remembered, ‘We heard at one

seminar that they changed the Direct Payments law in

Scotland to help this happen, why haven’t we done that

here? We should be big enough to be able to copy best

practice from elsewhere.’

‘We have also heard that people from black & ethnic

minorities are still not getting the services they need, this

must be sorted out’. Both were disappointed to learn that

new Government policy on lowering the amount of direc-

tion to Local Authorities had impacted on the work of the

TaskForce ethnicity sub group, lowering their 26 point plan

to just 3! Scathingly, Brian remarked that ‘we can’t tell

authorities what to do, but we can invade other countries!’

This conversation often came back to issues about

advocacy. Joan said ‘everyone agrees that advocacy is a

good thing, but no one is willing to pay for it, the Support

Team says Local Authorities should pay for it, not the

Government, but we hear from them that they don’t

have the money’. They talked about another recent example

of this in The Government Response to The Scrutiny

Committee’s Report on the draft Mental Incapacity Bill

(Department for Constitutional Affairs 2004) that stated ‘The

Government agrees that independent advocacy has a role to

play in supporting those who may lack capacity’, Joan

commented ‘they love the idea but still don’t say where the

money for advocacy is coming from…children and people

with mental health problems have rights to advocacy, it

should be the same for everyone.’

The Forum has clearly worked well as a group, it has

also produced significant results, laws have been changed,

influence has spread out from the Department of Health

and into other areas of Government. The principles of

‘Nothing About Us Without Us’ have spread far and wide

and more people with learning difficulties have been

seriously involved in senior and government work than

ever before. But Joan was cautious, ‘this does not mean

the Forum is safe however, we had hoped the Forum

would now be working towards independence, but

people do need to take it slow so they understand what

is happening. Equally people still need to be reminded

now and then that they are working for everyone with

learning difficulties.’

Joan and Brian have handed over a National Forum that

has, for the first time ever, brought together a national

group of people with learning difficulties that has worked.

Previous attempts have always failed due to infighting and

disagreements between various power bases. ‘This does not

mean we have not had our arguments on the Forum, of

course we have, but we still had responsibilities to do the

work for all the other people with learning difficulties in

England.’

Their achievements are documented in the Annual

TaskForce Report (Learning disability TaskForce 2004),

together with some of their worries and work for the next

phase of the Valuing People implementation. Joan and her

co-chair Brian White, deserve a considerable accolade for

such an achievement. The implementation of Valuing

People would have been very different without them.

References

Department for Constitutional Affairs (2004) The Government

Response to The Scrutiny Committee’s Report on the draft Mental

Incapacity Bill. http://www.dca.gov.uk/pubs/reports/mental-

incapacity.htm#part1

Learning disability TaskForce (2004) Rights, Independence, Choice and

Inclusion. Available from the MENCAP helpline 0808 808 1111.

Joan Scott and Brian White 53

ª 2004 BILD Publications, British Journal of Learning Disabilities, 32, 52–53