A 24-hour radio station for recovering addicts is among the new schemes in a Royal Society of Arts-led (RSA) project to put service users at the heart of their treatment and support, read my Society Guardian piece here.
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.
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.
By Ian Leech
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.