Tag Archives: service users

Autism lifelines at risk of unravelling

It is Saturday morning and 13-year-old James Hope is desperate to get to his activity club. His dad, Jim, reaches for his coat, but James is frustrated at having to wait. He stomps off to the car and waits silently, brows furrowed.

This scene takes place most Saturdays but rather than tiring of what other parents might regard as a mild teenage strop, Jim and his wife, Alison, celebrate it. James has autism and they are grateful that their son not only has a regular weekend activity but that he is keen to get to it.

But the kind of lifeline the Hope family relies on is under threat thanks to funding cuts. Click here to read my Society Guardian piece on how progress on autism is at risk.

Are we losing the care in our communities?

Bill Mumford, chairman, Voluntary Organisations Disability Group
When the revolution of care in the community took place, the decision to close long stay institutions resulted in a new, big idea; normal lifestyles, in normal houses, in normal streets.

People found themselves discharged from hospitals into small group homes in virtually every town in the UK. These were shared houses registered as care homes operating effectively as shared supported housing in the days before the supported living drive but without the important security of a tenancy. For many it felt like not only a new life, but a better one.

But now, just as people are looking forward to enjoying this life, due to bureaucratic, regulatory and financial reasons, people are trapped in unwanted small registered care homes. These homes are now closing because of running costs or the need to meet national minimum standards and changes in commissioning practice which prefer supported housing over ‘care homes’.

The problem is these closures are not happening in a strategic or orderly way, so the people living there face the prospect of another move into the unknown.

Take John, for example. He has a complex disability and moved from a long stay institution in 1986 to live in the community. His funding came from the council (let’s call it council A) where his parents lived although his new home was based in a different local authority area (council B).

In 1990 John moved to a smaller house, still registered as a care home (as it was before the supported living options became available), but less rural and with more to do in the community. The new house was still based in council B’s area and the funding arrangements continued.

Over the last 15 years John and his housemates have enjoyed a settled and fairly contented life building up their local support networks. Recently, two of the other people living there have moved on, leaving behind John and a fellow housemate, Mary (she is funded by council C).

The problem is that the charity that runs the home cannot find new people to move in to fill the vacancies – it has continued to run the service at a loss for the past two years.

The inability to find people to join John and Mary has been largely due to the understandable reluctance of authorities to make referrals to registered care placements.

As a solution, the charity could de-register the accommodation so it is no longer classed as a care home, but if it does so, it will come up against two bureaucratic barriers. Firstly, local government ‘ordinary residence’ rules mean council B would have to take on the support costs for John and Mary (while councils A and C would relinquish all funding). Secondly, council B is reluctant to open up its procurement arrangements to recognise the charity as a preferred contractor so will not place people there under contract for supported living!

Unknown to John and Mary, the home is likely to close and they will be faced with a move back to authorities A and C, a part of the country they haven’t lived in for over 20 years where not many family members remain. The costs to authorities A and C are very likely to increase while authority B will lose a good resource that could meet local needs.

The Voluntary Organisations Disability Group (VODG) researched the issues affecting people with disabilities because of the Ordinary Residence rules in 1997.

Our 2007 report titled No Place Like Home recommended three actions: firstly to agree the principle of a person-centred approach to funding and placement, secondly for the government to issue guidance and thirdly to put in place a framework for funding to transfer between authorities.

In October the VODG published Not in My Backyard as a follow up and found that despite the fact that new guidance had been issued there was little evidence of good practice. VODG demands the government include the concept of portability of social care entitlement in the white paper on social care due to be published next year.

We must do right by people like John and Mary; they represent a particularly wronged generation of people. Regardless of promises for future reform we need a kind of national amnesty, one that ensures funding is in the right place, providers and commissioners are working in partnership and individuals are given a proper voice. Because putting people first is not just a one off action, it is an enduring commitment.

Guardian Public Service awards; reaching the unreachable and support for prisoners’ families

My pieces this morning on two of the winners of the Guardian’s Public Service Awards held last night; Elmore Community Services and its fantastic work to reach the ‘unreachable’ with complex needs and the amazing support provided by Prisoners Abroad’s for the families of those incarcerated overseas.

How can you feel at home with bars on your windows?

Gemma Eadsforth

Gemma Eadsforth, 25, was in care from 15 to 18. Now a married mother of one, she lives in the North West and has been a LILAC (Leading Improvements for Looked After Children) assessor since January. LILAC is project funded by the Big Lottery Fund and hosted by the charity A National Voice which ensures looked-after children and young people are involved in decisions about their care and in the practices of the services that look after them. Here, Gemma explains how those who have experience of care assess how well services involve their looked after young people, deliver participation and LILAC standards of care.

The aims of LILAC (Leading Improvements for Looked After Children) are to make sure that young people are receiving the right care that they deserve and that they’re listened to by the professionals. We want to make sure that the service is listening to the young people’s views about what they want to change in the care system and be able to chase that up so the young people feel like what they say matters and the young people have a better experience.

I was in care from the age of 15 to 18. My experience was positive but some people have different experiences where they don’t feel like their voice is being heard.

I got involved in LILAC because I wanted to make sure that the young people who are coming into the care system or are already in the care system understand what their rights are and their voices are heard by their social workers or carers.

The simple things to me from my experience was when we wanted to have some sweets or chocolate we had to ask a member of staff to open the cupboard as they had locked it because we all used to eat it in one day, well not everyone but some people did. But if you were in your own home you wouldn’t have to ask and you wouldn’t have locks on cupboards. They say ‘treat it as your own home, make yourself at home’, but how can you when you have bars on your window or locks on doors? It made me feel like it was a secure unit, that it wasn’t home, that I wasn’t trusted and sometimes like it was a punishment for something I hadn’t done.

Some young people don’t like talking to their social workers or carers about what they want to change or anything that is going on with them that they are not happy with as they haven’t had the experience that they have of being in care, so the main reason I got involved in doing this was because I’ve had the experience of being in care and can relate what they are going through so, I feel like I would be the one who they could talk to.

By being involved in LILAC you get to see what is going on in different local authorities and how they run things. Also get to meet young people who are either care leavers or still in care. The main rewarding thing about being in LILAC is real achievement for me and my team to show that not every young person who is/been in care is a bad person or not able to achieve anything because they have been in care as the media only cover the negative never the positive.

In a recent assessment I was impressed by the facilities that were available but disappointed by the lack of involvement that young people had.

We have seven standards to assess on. The main things to have in a care setting are to make sure young people are listened to, to have a voice and be heard. Being corporate parents, would you treat your own children like this?

Every time we do an assessment we always do feedback to let them know how they did or what they need to do and offer our support if they need it. Because we assess on the seven standards they need to get all seven before they get the full LILAC stamp to say that they have been ‘LILAC-ed’ so when the inpection body Ofsted comes round, they can say that young assessors have been here and done assessment on our local authority and we have passed their standards.

If I had one wish for the government to improve things for children in care I’d ask them to try and remove the stigma about being in care. Make it more positive so young people don’t feel like they’re to blame for being taken into care.

Nothing can bring back Mel, but her experience is making a difference

Ian Leech and his daughter Mel

By Ian Leech

Following a summer of ‘common ailments’, in the August of 2007 my eldest daughter Melissa was diagnosed with non-Hodgkin’s lymphoma.

It was at that moment our relationship with the NHS began. Melissa was a student at Aston in Birmingham, she was living university life to the full and if there is such a place as heaven, it seemed Melissa was already there.

However, the day after her 20th birthday her world, and ours, changed in an instant, with the news that she had lymphatic cancer.

Like the staff that cared for Mel, we were thrust into the role of carers, the difference was, they were professionals, and they’d had training. There isn’t anything in life that can prepare you for the role we suddenly found ourselves plunged into, no parenting manual or course to attend, you rely on pure instinct, love, and the hope that the decisions you are making are the right ones.

We watched and waited, twenty four hours a day, seven days a week for nine months. We watched for any sudden rise in Mel’s temperature, a signal that she may have contracted an infection and the knowledge that a trip to A&E would be imminent. We waited for consultants to arrive with the latest news and would try to remain calm if it wasn’t what we wanted to hear. We waited for calls for results following x rays and scans. We watched the hard work put in by nurses and other staff and grew to appreciate the role of everyone, from the consultants to healthcare assistants and even the lady who came round with the tea trolley.

Mel’s care during her time in hospital was very good, but there was room for improvement, minor tweaks rather than wholesale changes.

Having patient access to the internet is something all hospitals should have. It kept Mel in touch with her friends and family and also allowed her to get support and relevant up to date information from the Lymphoma Association’s website.

Late teens to mid twenties is a difficult age range to nurse, Melissa wasn’t a child, but there was a loss of independence and an age regression that certainly brought about a strong reliance on us as parents. She needed us and fortunately, at both Burton and Nottingham hospitals we were allowed to stay with her for as long as she wanted. Another hospital we attended wasn’t so accommodating.

Our issues with Mel’s care mainly focused around communication and this lack of consistency between hospitals.

Mel was nervous of needles and I used to sit with her and let my hand be squeezed when blood was taken or canulas attached. However after being transferred to another local hospital for her chemotherapy, we found this practice wasn’t allowed and she had to deal with this trauma alone. It was at this same hospital where they refused to use her Hickman line (intravenous catheter) because the nurse wasn’t trained, this was after she’d been told needles would be a thing of the past after having the line inserted.

No news meant bad news. If a scan or test had worked, we seemed to be told immediately, whereas we always had to wait for bad news. This meant unnecessary worry. A simple phone call to explain that something hadn’t gone to plan but they were working on other options, would have alleviated the stress of not knowing.

On the whole though, Mel’s treatment and level of care in hospital was very good and this was helped by the wonderful rapport she built with her consultants at Nottingham and Burton. They knew Mel was a football fan and they used that as a common interest to build a patient/doctor confidence. It made Melissa feel special and that she was being treated as a person, not just a patient with a disease.

Our experience has led to me going into hospitals to talk to staff about our nine month insight into hospital life. The feedback from health professionals has been excellent. I also give the same service to bereavement groups. Nothing I can do will ever bring Melissa back, but it’s nice to know that even though she’s no longer with us, her experience is being used to make a difference to people’s lives.

To find out more, visit the website Mad4Mel.
For information about lymphoma visit the Lymphoma Association website.