Six service users tell Anabel Unity Sale what changes would improve their lives in 2006.
Andrew Lee, on behalf of people with learning difficulties
As director and chief executive of People First, the national self-advocacy charity for people with learning difficulties, Andrew Lee is clear how he wants services to improve this year.
First, he wants better consultation. He says: “I want people with learning difficulties to be properly informed and consulted on local services rather than coming to meetings just so councils can tick boxes.”
One area Lee strongly believes needs improving is the complaints system for service provision. The government says it is accessible, but People First lobbied several parliamentary subcommittees disputing this last year. Lee says: “We provided loads of evidence [that the system isn’t accessible], especially when the Mental Capacity Bill was going through parliament.”
He adds that local authorities should be required to detail the number of informal complaints they receive, as they now have to do with formal complaints.
He also wants information on how to complain to be produced in accessible formats for people with learning difficulties and for local authorities to publicise this.
In 2006 Lee would like the government to introduce a mandatory right for advocacy for people with learning difficulties. “The government says this is too expensive but they haven’t costed it, which is crazy.” Although organisations such as People First help people with learning difficulties to become aware of their rights, he says the government should do more.
In terms of new legislation, Lee believes that people with learning difficulties should have the right to demand equipment to help them communicate. “There should be an allocated pot of money that is ring-fenced and that can’t be touched other than for that purpose.”
Shannon O’Neill, who has mental health problems
Shannon O’Neill, 27, has been using psychiatric services since she was 12. She has bipolar affective disorder and post-traumatic stress disorder and has been an in-patient on a psychiatric unit seven times in the past five years.
She says the key aim for mental health services in 2006 should be the notion of a right to a service. “I am seen as functioning so I don’t get access to services until I am at crisis point and would have to go into hospital anyway.”
She wants more mental health services to be based around talking therapies and says there should be holistic back-up services in the community. She decries the current “all or nothing” approach to clients where either the person has a severe and enduring mental illness and receives a care plan or they are left to rely on their own network for support. “This is wrong and it’s about services filling in that gap.”
Service provision could be improved by ensuring that crisis services are accessible out of hours and that users have an alternative to hospital when they are in crisis. “I’d like to see crisis houses developed or have someone come and stay at my home with me.”
She saves her biggest criticism, however, for the draft Mental Health Bill. She says the government should be thinking about bringing in a bill that improves access to services. “This is a much more positive way forward than one that treats all people with mental health problems as dangerous.” She is very concerned that the proposals could subject her to compulsory treatment in the community.
Ruth Grice, who has a physical disability
Ruth Grice is visually impaired and uses a wheelchair. She is a trustee of disability charity Leonard Cheshire’s service users representative executive committee.
This year she wants the government to establish more advisory bodies on disability issues which fully involve disabled people. “There needs to be cross-government recognition of the need to involve everyone in the decisions that affect our daily lives.”
On the back of this she calls for services to be much more user-led, with more publicity given to the benefits of using direct payments, which she says all disabled people could benefit from. She adds that these payments should work alongside the individualised budgets that are to be introduced.
In addition, Grice wants to see an end to the “them and us” approach that she says still exists among some social work professionals. She says: “You get the impression that disabled people are ‘them’ and not individual people with needs.”
The government also needs to increase the money allocated through the disability living allowance, she argues. “Most people cannot live on it because it’s not a realistic living allowance in terms of people’s financial need.” She also wants a £200-plus heating grant to be awarded to people receiving the higher level of the allowance. This would make a huge difference to her, she says, as she has to pay £80 per month for heating.
Ultimately, Grice wants disabled people to receive “a realistic amount of money” so that they can spend their time how and with whom they choose.
Harry Graham, an older person
At 80, Harry Graham is passionate about improving services for older people. This is why he is secretary of the advisory group, Better Government for Older People.
He is eager to promote older people’s independence and does not believe people should assume older people should be placed at care homes when they become frail. Instead, he thinks social services should look at providing more help for the individual in their own home. He adds that more use could be made of existing resources in the community: “We don’t use facilities that are already available. Local resources should be used more, such as churches and faith groups.”
Providing more help in people’s homes would not necessarily cost councils more, Graham argues, they would just need to juggle their budgets more efficiently and look to untapped sources for assistance. He says enough money already goes into local government and that more should be spent on service delivery, rather than staff wages and pensions.
For Graham, the green paper on adult social care offers the chance of “tremendous change” if GPs, primary care trusts and councils work together. Adopting a single assessment framework will help services meet the needs of older people and save them from constant assessments with different practitioners.
He would also like older people to be involved in consultation about the services available to them. “It’s important that older people are talking to services because they have a lot of life experiences.”
Sheka Tarawalie, an asylum seeker
Sheka Tarawalie is a 32-year-old asylum seeker from Sierra Leone. As a journalist he came to the UK for a conference in February 2004 and while he was here wrote an article that infuriated his government and the militia, which attacked his family home. He claimed asylum in August 2004. Previously, he had been imprisoned by Sierra Leone’s government for his writing, appeared on a death list and spent a year in hiding.
His first asylum application was rejected and he was evicted from his accommodation in Oldham. Destitute, he relied on food from the Salvation Army and moved between friends’ houses.
Last September he reapplied for asylum and is now in National Asylum Support Service accommodation, under section four of the Asylum Act 2004. He receives vouchers worth £35 for food but no cash. “The problem is how do you pay for transport and for pens and paper?”
Tarawalie wants the asylum process to be simplified and made faster. In particular, he wants asylum seekers to be given the chance to work while they wait for their cases to be decided.
He says: “I want to work; I don’t want to be supported. I don’t want to sit and wait for my decision.” He adds that if asylum seekers were allowed to work they could contribute to the UK’s economy and not rely on taxpayers.
One of the major changes he wants 2006 to bring is for the Home Office to treat asylum seekers as human beings and “not as a group of numbers”. He also wants the government to abolish section four and allow asylum seekers to decide how they spend their entitlement.
Laila Elmoudden, a care leaver
Laila Elmoudden went into care four years ago when she was 17 because she fell out with her family. Initially, she lived with a foster carer before she was placed in a secure unit for eight months because of her criminal activity. In January last year she moved into semi-independent living and has been living at her current accommodation since August.
Elmoudden is involved in two projects that help social workers relate to young people in care. She feels that these service users do not always receive the help they need and wants this to change in 2006. In particular she is unhappy with how social services communicate with looked-after children. “Social services could improve by understanding a bit more about the young person,” she says. “When I’ve got reviews back they have written about things I didn’t do. They write things that have nothing to do with you and it’s just not nice.”
She also wants the way foster carers deal with young people to change. “Don’t foster a child if you are not going to keep them and only want easy money.”
She would like social workers to provide more support. “If we are going to be semi-independent then they should be giving us more help with things like cooking and budgeting so we can do it ourselves.”