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.
See the Guardian’s new social enterprise network for my piece on social enterprise as a magic wand: The challenge facing social enterprise, warned Peter Holbrook, chief executive of umbrella group the Social Enterprise Coalition, before the election, “is to be vigilant to ensure that the discourse on social enterprise is not distorted by the next government’s ambitions and policies around it.”
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.
Jo Sharp, 38, from Croydon, south London, is a parent support advisor with the charity School-Home Support (SHS). Jo works in an infant school, a junior and a secondary, all in south Croydon. Here she explains why her role is vital and describes its challenges its rewards.
I became a parent support advisor because…I’d provided support to my neighbours, it became apparent to me that there were many families and children who weren’t receiving the help they were entitled to. I enjoy the range and diversity of the work as well as the fact that I reach out to families directly and provide a holistic service to them.
My aim is…to develop a supportive environment for the families and children. For me, the relationship is often the work and I feel it is a great privilege to be allowed into people’s lives and share in their experiences.
The first child I helped support was…suffering from extreme anxiety over going to school and his attendance was below 50% as a result.
Teachers knew there was an issue with this child because…he’d attend maybe two or three days a week and leave early. He appeared withdrawn and lacked confidence.
The first thing I did was…meet his family to look at possible reasons for his anxiety. His parents were extremely worried and had tried to support him in the best way they could. Despite this, the child would often lock himself away in his room rather than face questions about school. His parents and I agreed that I would meet with him in school rather than at home.
The reaction I got from him was… we spent a long time discussing his experiences at school and his feelings regarding his own self esteem and confidence. Because he had started school in year eight, he’d missed out on the bonding with his peers in year seven. This had a big impact on how he felt he fitted in, and he’d started to put himself second to everyone else in his quest to ‘be liked’. He’d also started to develop much faster than some of his peers so felt he stood out too much. All this had left him feeling increasingly anxious about coming to school until he just couldn’t face anymore. Over the weeks we looked at ways of improving his assertiveness and developing a positive image of himself. He was allowed a reduced timetable at school, gradually building up to full days.
I knew we’d started to get somewhere when…he became more active at the weekends and started playing football and socialising more with others. Prior to this he found it difficult to leave the safety of his house for prolonged periods.
The hardest thing was…keeping up the momentum. It would only take a slight knock for him to feel anxious, however by maintaining close contact with him and his family and being there to support him when he was feeling anxious, the anxiety became less severe.
The most rewarding thing was…to find that he’d not missed one day of school and that he’d really turned his life around! His attendance is 100% and he participates in activities outside of school, his teachers have said he’s much more positive in school and appears to enjoy his time there. His family has also expressed their delight at having their son back!
To do this job you need to be…patient! Change doesn’t happen overnight. The rewards are fantastic when you see first hand how the support you have played a part in has had positive effects on families and young people. I believe that you need to be able to connect emotionally with the families, having empathy and compassion whilst also being able to look at the bigger picture and think logically about what support can be provided. A good understanding of local services and outside agencies is key.
The biggest problem facing the sort of young children I help support is…a lack of understanding. Sometimes it is very practical support that is required and at other times it is more emotional, but either way I feel that young people often feel misunderstood because we as adults actually lack a perspective on their world.
If I could have a word in education secretary Michael Gove’s ear I’d…ask that more focus be placed on supporting families and children in and outside of school. It works!
The best thing a child I’ve helped support has said to me is…thank you!
By Andrew Purvis
I am currently CEO of youth charity Fairbridge, I have 20 rewarding years experience working in the private sector behind me, but it might surprise you to learn that I was ‘neet’ (not in employment, education or training) once – just like the million young people being tagged with that acronym today.
My experience was actually a good one, I had four months off following my first job after university, and it was a very productive time in my life. I gained skills which I then found useful in the job I moved into. Being neet wasn’t a problem for me, it was a situation I knew would be temporary and that I had the wherewithal to get myself out of. But I did not come from three generations of unemployment; I had not been the victim of domestic violence; I hadn’t been in care or excluded from school and I was lucky enough to have two loving parents to support me.
It’s this chasm of difference between the opposite ends of the neet spectrum that worries me in the wake of the comprehensive spending review. While schools funding has been ring fenced, complementary provision like that provided by Fairbridge is vulnerable. Benefits for the jobless and homeless are going to be reduced so for those million young people not in education, employment or training, difficult times are about to get even tougher. But not to worry, the government is using a payment by results approach to get lots of them back into work – so that’s okay, isn’t it?
Well no, it’s not. Having a neat, neet acronym is helpful shorthand and has undoubtedly brought attention to the problems of youth disengagement but the label is now confusing the issue and I want us to stop using it. Being badged ‘neet’ isn’t nice but it’s not the stigmatisation I have a problem with. It’s the fact that by putting the same label on a million young people, we’re preventing help reaching those who need it most.
A recent government report by the Audit Commission segmented the million neets and identified 380,000 young people, who were classed as being ‘sustained neet’. They have the biggest problems, are the biggest cost to society and are in greatest need of investment. By grouping all these young people together, it is easier for those who are commissioning services NOT to focus on these sustained neet. The term now creates great confusion over where support should be targeted. It is a real concern that much of the recent investment in reducing the neet figures, has gone to the top end – those closest to the job market like I was all those years ago – rather than the sharp end where it is genuinely needed.
As the economy recovers, those closest to the job market will move on to a job or education and the commissioners can put a tick in the box marked ‘reduced neet figures’ and go home thinking job done, ignoring the fact that the sustained neets are still there, without any targeted support. The label hides the fact that we need to start putting resource where it is needed most and where it will have the most impact.
Fairbridge runs courses across its 15 centres which focus on the skills these sustained neets will need to get back into employment, often in conjunction with corporate supporters. In London our Employ Me course gives young people, most of whom have never been in a workplace, basic skills to start them on the road to employment. From workplace behaviour to discovering what types of jobs are out there, they need to start from scratch which is what we help them to do. Without this support they will remain unable to take the even the first steps towards employment.
If we could make real inroads into that 380,000 sustained neets then many of our communities would be happier, safer and we would see a corresponding reduced burden on the coffers of the Ministry of Justice, Home Office, Department of Education and – because mental health is such an issue with our youth – the Department of Health.
To do that we need to commit to properly targeted interventions and this requires sophisticated commissioning of solutions. Let’s drop the neet label and let’s stop using money inefficiently by lumping together large groups of the population who have vastly differing needs. Only when we start being honest about where the real problems lie, can we start solving them.
Fairbridge is holding a parliamentary event today to raise awareness of its work among new MPs.
By Shaks Ghosh
“A hard road, leading to a better future, is how Chancellor George Osborne spoke of the journey ahead of us in yesterday’s Comprehensive Spending Review (CSR).
All I know for certain is that it’s already been a bumpy ride for charities, many more of which, it’s now been estimated, receive public money than previously thought. The Third Sector Research Centre believes that some 35% of organisations (rather than between a fifth and a quarter) get statutory funding and of those, 23,000, or 14%, regard it as their most vital source of income.
In the youth sector alone, the magazine Children & Young People Now, has found that of more than 130 charities, 82% are already being forced to cut youth projects because of funding shortages.
And, even with the very welcome one-year, £100 million transition fund announced yesterday to help voluntary sector groups adjust to new public spending budgets, it is going to get tougher. Think tank New Philanthropy Capital (NPC) warned on Monday that these government funded charities are approaching a “maelstrom”. It expects the sector’s income to drop by between £3.2bn and £5.1bn.
So that’s just some of the bad news. But there is good news too as we peer into the gaping chasm of what Shadow Chancellor, Alan Johnson, has called “the deepest cuts to public spending in living memory”.
Along with the transition fund, there’s £470 million over the next four years to build the capacity of the voluntary sector to deliver the Big Society.
I don’t know what this expanded delivery role will actually mean, the devil will be in the detail, but the CSR adds that it will “look to set proportions of specific services that should be delivered by non-state providers including voluntary groups.”
Could this support amount to enough of a lifeline? Possibly, but only if we are really bold and act now! During the economic down-turn last year, the Charity Commission found that only 32% of charities surveyed had taken steps to limit the impact of the recession, with just 14% reducing costs.
An ostrich mentality isn’t going to help. And I don’t say that lightly. I’ve felt that pain. As a charity chief executive, I’ve had to lose staff on occasions when the funding didn’t materialise.
What my last few years at a venture philanthropy fund have taught me is the importance for charities to concentrate on their ‘back office’ as much as their compassion.
It won’t be for everyone, as charities are driven by much more complex ‘bottom lines’ than pure profit and there will be a learning curve, but there’s much to gain from partnership with business. The Private Equity Foundation (PEF) has organised some 15,000 hours of pro bono support for its portfolio charities so I’ve seen first-hand how powerful it can be. In some cases, we’ve worked with charities which have managed the move away from substantial government funding to more sustainable models, while others have achieved huge growth in impact.
Which leads me to better measurement and evaluation. Only the demonstration of effectiveness will ensure support, as government tenders and pays for more services by results and funders choose between a deluge of ‘asks’.
It’s not measurement for measurement’s sake; evaluation can also help create a virtuous circle as organisations scrutinise the data to see where they can improve outcomes. It will become a vital tool, in what’s likely to become a ‘race for quality’ and more foundations should be prepared to pay for it.
Funding from the public and philanthropists cannot plug the hole left by government cuts. But, I believe that business does have a huge contribution to make in safeguarding the sector and I will be doing everything humanly possible to bring more of its money and skills to charities in the coming years.
“People assume because we’re young and because we have suffered with a mental health problem, what we say is irrelevant,” says 19-year-old Edinburgh student Sarah-Jane Dougan. Dougan and Leeds-based Caroline Holroyd, 21, are members of Very Important Kids (VIK), a panel of campaigners advising mental health charity YoungMinds on its aims.
Both women have experienced mental health issues, including depression, for which they have undergone counselling and therapy. VIK aims to help shape health services; it recently worked with the Royal College of Psychiatrists, for example. Dougan and Holroyd’s brand of user involvement reflects health secretary Andrew Lansley’s patient-led vision for the NHS. Here they explain why politicians and policymakers should listen to them.
We got involved with VIK because… it was a chance to use our negative experience with mental health, and get something positive out of it. I’m sure a lot of service users have opinions on how their service can be improved or change, and they know what worked and what didn’t, and also what needs to be done. As part of VIK we have the opportunity to influence these things, and get the ball rolling to bring change (Sarah Dougan/SD).
Patients must influence services because… We’re the experts; real life experience is what has informed our opinions (Caroline Holroyd/CH).
Young people in particular must influence services because…we are the future, the next generation. We’re the ones who will be using these services in years to come (CH). Having a good service for young people will mean that they are less likely to have to use adult services when they are older. Prevention is better than treatment (SD)!
The biggest challenge has been…making people realise that young people with mental health problems can have a valuable input. People seem to assume that because we are young, and because we have suffered with a mental health problem, what we say is irrelevant (SD).
Consultation today is…rare, but improving. Sometimes I feel when services ask for young people’s participation it is simply a tokenistic gesture – lip service (CH).
The key to real patient involvement is…engaging with people from all areas of society and making sure it is easy for them to get involved (CH). It’s about listening and actually hearing what the patient has to say rather than the organization simply making a bunch of decisions and then asking if it’s ok (SD).
Mental ill-health among the young…isn’t always openly discussed even within families where one or more of them has a mental health problem. Mental illness in itself is an issue that is kept under wraps because of the prevailing stigma, lack of education and the many myths surrounding it, sometimes perpetuated by the media (people with mental illness as serial killers, and so on) (CH). It’s an issue that people would rather admit wasn’t happening (SD).
The biggest problem with the mental health system is…the waiting times for receiving treatment, particularly talking therapies. People can be waiting months and even then not end up receiving the correct treatment for their condition. On the whole treatment can be very hit and miss, and support isn’t always sustained meaning people can be suffering in silence (CH). People can’t access services when they need it. If you have anorexia for example, mental health services only seem to recognize it when your body weight is so low that you need to be hospitalized. This is relying on the patients physical health rather than their mental health (SD).
The biggest problem with psychiatric units is…they can feel like prisons; they can be very disempowering (CH). Patients are there to get help – not to be punished (SD)!
The biggest difference the government could make in mental health policy would be…to treat it with the same seriousness and urgency as physical health (SD).
If we had five minutes with health secretary Andrew Lansley…we’d ask him what he thinks needs to change. If he has the same points as us – why hasn’t something been done about it before (SD)? I’d emphasise the importance of prioritising young people’s mental health services and how promoting emotional wellbeing and using early intervention techniques can prevent more severe mental problems which will ultimately put less pressure on the NHS (CH).
Full story on Action for Children’s shocking new research in a piece I did for today’s Society Guardian. Makes you think twice about the shabbily-dressed boy at school who no one wanted to play with or the scrawny girl who got bullied in the playground. There’s a fine line between creating a vigilant society and encouraging the scaremongering finger-pointers, but today’s new report raises some important concerns ahead of the spending review that’s likely to decimate funding for child welfare.
From my Society Guardian feature this morning:
Anna McNaughton fell in love with the West Sussex seaside town of Worthing when she moved there two years ago. It’s a stone’s throw from Brighton, around an hour by train from London, and its bars, cafes and restaurants are edged by a tree-lined promenade. Having had a room in a shared house since moving, the 23-year-old wants her own space.
Some interesting comments posted about this article by Guardian readers are here.