Radical ideas sought from users for the future of adult social care

Campaigners have welcomed last week’s announcement by community
care minister Stephen Ladyman that he will publish a green paper in
the autumn on the future vision of adult social care. However,
concerns have arisen over the lack of service user involvement in
the consultation process (news, page 6, 12 August).

Since plans for the vision were unveiled in mid-April at the
Association of Directors of Social Services spring seminar, Ladyman
has been asking for people’s ideas on what it should look
like.

Part of this involved a Department of Health survey, which was
hosted until the end of June on the Social Care Institute for
Excellence website. However, results published last week (see
panel, facing page) show that it received only 178 responses in
this time and that few were from service users and their carers.
Ladyman has now extended the deadline until the end of September in
order to draw more responses from this group.

He says: “A large part of the responses I have had so far are from
professionals, people who provide care, and vested interests. One
of the reasons I decided to hang fire is I hadn’t heard from enough
users yet.

“The consultation is reopened in the hope that users will
contribute but also I am going to carry on making some speeches,
doing some question and answer sessions and Big Conversation events
to seek user experience.”

However, the survey was not available in accessible formats for
people with learning difficulties or for disabled people, such as
those with visual impairments, in its first run. Despite initial
doubts that the extended consultation would be available in an
accessible version, a DoH spokesperson said this may now happen.
She added that accessible versions of the responses given within
the original deadline and the minister’s foreword were available on
the Scie and the DoH websites and that the latter includes an
e-mail link to the department that service users can use to send in
their views.

Andrew Lee, director of People First, a national organisation of
people with learning difficulties, was highly critical of the
government’s failure to publish an accessible version of the
survey. “In this day and age this is totally unacceptable. We think
that when a document comes out the accessible version should come
out at the same time.”

Unrealistic time frame
Joan Scott, director of Action Unlimited, a self-advocacy group for
people with learning difficulties, agrees with Lee. “People with
learning difficulties should be involved from the beginning. It [an
accessible version] should have been there from the start,” she
says.

Peter Beresford, chair of service user involvement group Shaping
Our Lives, says the lack of responses from service users was “a
cause for concern” and that the survey’s inaccessible format would
have contributed to this.

Service users also welcome the extension of the deadline arguing
that the original time frame was unrealistic. Beresford says it was
“too fierce” and although his organisation had delivered a response
on time, it was a struggle.

Lee thinks that at least four months should be provided. “If
Ladyman is serious about bringing everything into the 21st century
he needs to consider that most self-advocacy groups meet once a
month,” he says.

Service users have mixed opinions on how well the survey was
publicised. While Lee says the first his organisation knew of it
was from Community Care, Beresford says he has seen
Ladyman speak about it at conferences that were well attended by
service users.

But groups are more positive about the consultation process
generally. Alongside the work Ladyman is doing, Scie has also
arranged a series of focus group events for stakeholders, including
service users, that will run parallel to the government’s vision
and feed into it. The focus groups, which are meeting in England,
Wales and Northern Ireland, will look at issues including the
definition of social care and the feasibility of organising
services around the principle that they should be “person-centred,
proactive and seamless”.

Ladyman has also shelved plans to produce a report on the direction
the new vision will take, which was due in the summer, so more time
can be given to thinking through radical ideas raised in the
consultation, enabling them to be fed into a green paper.

However, Ladyman has been surprised and disappointed that some of
the responses to the survey were a bit “world weary and
predictable”. But he has been equally surprised by the number of
respondents who have said it is a “wonderful opportunity” to change
the way social care is thought about.

“That has surprised and heartened me, and again it is why I decided
not to write anything before the summer but to take time and make
the green paper really radical,” he adds.

So what would service users like to see in the green paper when it
does come out?

Beresford says Shaping Our Lives would like adult social care to
involve service users effectively and on equal terms with
providers. This could lead to real change and improvement in the
lives of users.

He adds that it would also like to see service users being offered
direct payments. He says people who access direct payments find it
“fantastic”, but government investment in infrastructure is needed
for it to be rolled out further.

Scott feels the government needs to ensure that service users have
the scheme explained to them in a language that they understand.
“No one has really explained it and I’m thinking about [going on to
it] myself,” she says.

She also wants better co-ordination between adult and children’s
social services to ensure that parents with learning difficulties
receive more support in caring for their children. Lee would like
to see an improvement in social services official complaints
procedures.

Ladyman has raised the idea of making direct payments compulsory so
they become the only way councils provide people with care. He
admits this has been met with widespread opposition because many
would find it too difficult and not want the responsibility.
Therefore he has come up with an alternative.

“What about making everybody receiving care have a personal
account, so they have to be told what the budget is for their care
and then consulted on how it’s spent, even if the council is
providing the care? That might be something we would want to do,”
he says.

Many of those on the ground praise the minister and believe he is
sincere in his pledge to ensure the new vision will not be
developed top down. But without an accessible version of the survey
it is questionable how many service users will share their vision
of the future with him. 

Results of the survey

• Scie received 178 questionnaires by 30 June. About one-third of
  the respondents did not give information about themselves but, of
  the 121 that did, only a handful were service users and their
  carers. There were 22 from the voluntary sector. This category
  included organisations run by service users.
• Respondents were evenly split in their views on whether adult
  social care has the balance right between positive intervention and
  unnecessary interference in people’s lives. Of the 128 responses
  that gave a direct reply, 40 per cent agreed that the balance was
  right, 41 per cent disagreed and 19 per cent were undecided.
• Only 14 respondents disagreed with the statement that some
  models of adult social care can lead to dependency, but only a
  small number mentioned direct payments as a solution to
  dependency.
• 108 of the 116 people that responded to the question “Do you
  agree with the minister’s new vision for adult social care?”
  supported the policy, though a small number questioned whether it
  was genuinely different from previous policies.

Survey and results from: www.scie.org.uk and www.dh.gov.uk