Service User Voice

When it comes to politics on a national level, I'd like to think of myself as an interested bystander. Whether it's party politics or nationwide organisations, all the networking, discussions, meetings and decision-making happens in London, by people who live conveniently close by. If we're lucky, these deliberations might take account of regional issues and, if we're very lucky, they might even represent the real concerns of ordinary people up and down the country. .

As somebody said to me recently, "London's just a different country, now."

When I heard about the merger of three of the biggest pan-disability, user-involved organisations, Disability Alliance, Radar and the National Centre for Independent Living (NCIL), it seemed like a reasonable idea on the surface, bringing together three organisations, each with a different emphasis, but all ( I hope) aimed at empowering people with disabilities, and representing our interests at a national and international level.

A pooling of resources, less confusion for people with disabilities when they're trying to access information and advice, perhaps a standard-bearer we can - metaphorically - march behind. Like an old-fashioned mainstream political party, a broad church of needs, interests and opinions. One click on Google rather than three.

Why is it then, that so many of my colleagues in disability are so critical, cynical and, in some cases, plain angry about the merger?

First of all, there's the unfortunate choice of a name for the new organisation - Disability Rights UK. The other major national disability body, the United Kingdom Disabled People's Council (UKDPC), has a project called Disability Rights Watch UK, which monitors implementation of the UN Convention on the Rights of Persons with Disabilities, pressuring national institutions to stick to the convention, and reporting back to the United Nations.

Did nobody think to consult UKDPC? Was there any move to involve UKDPC in the merger, even? There's a risk that it's all going to end up looking like something out of The Life of Brian - "We're the People's Front of Judaea - they're The Judaean People's Front..."

Then there's the sense of monolithic, remote decision-making. Despite the year-long consultation of their members about the merger, there's a sense of the changes being self-serving, of chairs just being shuffled around the same table(s), with a brand-new logo, but with no new ideas.

And that's my gripe: at a time when people with disabilities are under attack from the media, the government and rising hate crime, we need strong new ideas, strategies and leadership in this new climate, as well as a strong new organisation. And it isn't obvious, yet, that we have those things.

By Jarone Macklin-Page, 21, who is an actor and care leaver

By Simon Heng

When I was moving from institutional care to independent living, my local authority gave me a choice. I could choose the in-house care team, fitting my needs into their schedule - which meant that my mealtimes, bedtime and morning call would all be chosen by somebody else - or live-in volunteers.

So, for the first three years of independence, my care was provided by a team of young people, through the European Voluntary Service (EVS) and Community Service Volunteers. They were mainly young Europeans experiencing this country, perhaps as a precursor to a career in medicine, physiotherapy or nursing. Given some basic training in disability awareness and moving and handling techniques, they - and I - were thrown in the deep end, together, for up to six months.

At the beginning, their understanding of English was often poor, which could be frustrating. Equally, many had few household skills - sometimes I had to teach them how to use a sharp knife safely.

But I became a better teacher, and a better communicator; and they, being keen to learn and enthusiastic, picked things up quickly. I found that, being constantly surrounded by younger people kept me younger, in outlook at least, and I discovered many things about their countries of origin.

Sadly, the scheme had to end: EVS decided that the volunteers, in being expected to perform personal care, were being exploited, and withdrew.

Not all the placements worked out, but the scheme was sensitively and efficiently supervised.

On the whole, it was a fair deal. The volunteers made friends with each other as well as the people they cared for, and had perspectives on Britain that few other visitors would get.
I made some good friends and still receive news of their lives and they of mine. My daughter, who turned 17 recently, received an e-mail birthday greeting, in German, from one of my volunteers who left 10 years ago.

Simon Heng is a disability activist and a wheelchair user

By Simon Heng

Like most people, I grew up with an expectation that I would be self-sufficient and self-directed, limited only by my own ambitions. When I realised that I was going to live with a severe disability from the relatively young age of 36, with few assets and a pitifully small pension fund, I also had to come to terms with the likely future of life close to the poverty line, claiming means-tested benefits and having my care paid for by the state.

In a strange way, though, it was good that my future was so clear-cut: another 10 or 15 years of working, asset building - perhaps a bigger house, some savings for a rainy day, perhaps a more stable relationship - and I would have been facing the prospect of quickly using up everything I had planned for in the costs of coping with disability. And I think I would have understood how so many people feel about the unfairness of being so diligently far-sighted, only to see their savings disappear so quickly.

The most positive thing about the Dilnot report is the underlying sense of fairness: at whatever stage of life, if people need to be cared for, there is some sense that this can be done in a way that allows people to retain some self-direction, some reward for their life's work, some security that they will not lose all their assets, and with reassurance that their care needs will be met.

Dilnot doesn't claim to be able to fix the whole adult social care system, and is honest enough to point out that his recommendations will cost an extra £1.3-2.2bn. But its importance is in making no distinction between the disabilities brought on by ageing and those of "younger" adults. And it states clearly that "it is a matter for celebration that people are living longer" and that "caring for and supporting each other should be something to celebrate".

This is a blueprint for a caring society that any government ignores at its peril, if not to its electability, but at least to any claim to a sense of social justice.

Simon Heng is a disability activist and wheelchair user

by Kaarina Elisabeth

"Listen to advice and accept instruction and in the end you will be wise" is the only Bible proverb I remember, I guess because thousands of years on, the words still apply.  I've always been at a loss to understand why governments make plans before, rather than after consultation, and then expect them to work.

This is very much the case in mental health when it comes to GP commissioning. In 2009, a listening exercise where I live questioned service users on plans to move them from secondary to primary care. Findings revealed most people felt GPs 'did not have a sufficient knowledge of mental health issues.' Ten years previously, a Mental Health Foundation survey found 44% of respondents felt discriminated against by their GP.

Beyond the medical

GPs are trained in the medical model. They prescribe medication and make referrals to other professionals. Mental health recovery, however, goes beyond the medical. The triggers are varied: stress, relationships, money problems, unemployment, physical illness, drug or alcohol abuse, diet, lifestyle, loneliness, childhood neglect etcetera...

GPs treat symptoms not causes. To address causes requires time to listen and a holistic, practical approach. This rarely happens though, even in secondary care. People spend their lives waiting for referrals to different agencies that never talk to each other, receiving inappropriate help at inappropriate times, too late or too early, or not at all in some postcodes. The system, rather than being the cure, becomes the cause of illness.
What is required, is a total integration of health and social care that puts each patient with their individual needs at its heart, where everyone can access the same help, wherever they live in the country.

Against choice

Now, after a listening exercise, a report proposes that other healthcare professionals should be involved in commissioning, not just GPs.

Will this make a difference?  Sadly, I doubt it, because it is the very people who GPs will turn to for advice - the psychiatrists, and other healthcare professionals, who are so against choice in mental health, despite all the evidence that personalised services benefit this group the most. The voice of the mental health service user will, as ever, be the last to be heard, stifled by a system that has utterly failed but that refuses to change.

No change

I recently visited a mental health history exhibition and was surprised to come across a 1995 report 'Building Bridges,' the aim of which was integrated services. 

A decade on, nothing much has changed.

Moreover, NICE guidelines discourage choice and progress. If a patient reacts badly to a medication or treatment, they are therefore offered no other treatment options. Evidence-based alternative therapies, such as exercise, relaxation, ecotherapy or massage therapy, many of which form part of the healthcare system in other countries, are despised by our uninformed medical profession, so aren't commissioned at all in the UK or only in certain postcodes, to the lucky few.

Listen to advice and accept instruction and in the end you will be wise. It's about time governments and commissioners started listening to service users and their carers, rather than those that claim to represent their views and interests. And it's about time those that work in healthcare started listening too.

(pic: Truthout.org on flickr)

By Simon Stevens, disability issues consultant, trainer and activist







The clear winners of the Dilnot report are the insurance companies who will now have more limited risks in covering individuals for care, with the maximum cap on costs of £35000.
The report appears to have a focus on full-time care among people aged over 65, which I'm not sure is really reflective of the needs of future generations.
People may end up feeling that they will need to be whisked into residential care on their 65th birthday when this is not the case.

As someone who had an impairment on my 18th birthday, I should be celebrating that I would be getting free care for the rest of my life under Dilnot's plans. In reality, I think I would become a third-class user as someone who can't complain about the quality of my care because I am not paying for it.

I feel that unless the assessment and funding of support for working-aged adults is separated into a national Independent Living Fund-style service, it is going to be very hard for councils to manage what would become two separate social care pathways in the resources they have.

I also worry that a very legal distinction between 'disabled people' and 'older people' would have implications on how non-social care services are managed as it enables a new 'them' and 'us' to form. Unless 'disabled people' requiring support are better supported to make a meaningful contribution to society, which is more costly, I do fear it will further question their place in society and reignite medical model solutions.

Dilnot has attempted to add certainty to an issue which has little certainty. When I examine my impairment-related quality of life at age seven to now at 37, and then try to imagine what it will be like at 67, it could be radically different. I think this is an issue which is set to never be properly resolved because it is so person-led.

By Lauren, a young carer

My name is Lauren and I am 14 years old. I am a young carer. I look after my mum who has depression. I have three sisters. Georgia is 12, Chelsea is 10 and Brooke is 5.

A normal school day is really hard. I wake up around 6am, get washed and dressed and ready for school. I wake up Brooke, get her washed and dressed and ready for school as well. Then I shout up to the other two and make sure they are getting ready for the day. I make breakfast for everybody and get our bags ready school.

After my sisters are ready for school, I put the kettle on and make mum a cup of coffee. I take her her box of tablets to make her better and ready for the day to come. When everybody is happy and ready for school I put on the TV until 8am and then everybody has to go to school. Brooke goes round to see a friend, Chelsea leaves next and Georgia goes in her own time.

Always thinking about mum

When I walk to school, I'm always thinking about mum. It's always on my mind whether she's ok. It's really hard to pay attention in school while you're really worried about your mum and my schoolwork suffers because of it. I try really hard and I enjoy writing, but sometimes it feels like I don't know what I'm writing because I can't concentrate. I'm falling behind in English and my grammar isn't great. I really struggle sometimes, but I don't want to ask for help because everybody will think I'm stupid or something.

Right now I'm doing badly at school and I've people at school on my case and bullying me. It's good that I'm not allowed to use Facebook or MSN because that could make it worse. It's really hard. Every day I'm at school I have to take my phone so I can text mum through the day to see if she is ok.

Making sure house is clean

On the way home from school I pick up Brooke, get her changed and then she's goes to play outside. I make sure the house is clean and tidy and then I cook dinner. I have to get everybody fed and into their pyjamas, ready for bed. Brooke goes to bed at 6.30, Chelsea goes to be at 7.30 and Georgia goes to bed at 8.30. I go to bed when everybody else is asleep.

Once my sisters are in bed I have time to sit down by myself and do my homework for the next day and pack everybody's bag for school in the morning. Then I have a bath and go to bed.

It's the same all through the week but on Mondays I have a break because I go to Basingstoke Young Carers project in the evening. I also have time off on Saturday and Sunday because my grandma and granddad let us stay for the weekend. It's nice there and we can have a laugh. I do love my family, but caring for them but it really is tiring and difficult.

Lauren attends the Basingstoke Young Carers project and also sits on the National Young Carers Forum, which is organised by The Children's Society.

(Pic: FreeFoto.com)

By Simon Stevens, a disability issues consultant, trainer and activist

It is certain that the honeymoon for personalisation is over and the concept has hit the rocks, but has it now failed? This is a question with a number of answers.


The philosophy underpinning personalisation goes back half a century and embodies what disabled people have long fought for. What has changed in the past few years is that the speed of supposed implementation, the motives behind this implementation and the identify of those driving the change have created many doubts among many people, which cannot be ignored.

Pure unpolluted personalisation was always designed for and by a specific type of service user who was always going to prefer maximum control over their lives. Clearly, the successes this brought had implications for all service users. But I am not sure any independent living campaigner expected councils to take the care and support plans of their most independent users and photocopy them to be used with every other service user.

Where personalisation has really failed is in how it was supposed to have made people's decisions about their lives more simple and to recognise the expertise and experience of users to make decisions as naturally as everyone else. This should have resulted in less professional involvement in people's lives. But seeing their jobs on the line, many professionals have stolen the language of 'choice and control' and, assuming only they are capable of planning the lives of disabled people, turned choosing what to wear into a skill requiring a PhD!

I often meet professionals who, after getting over the shock of touching a real live service user with a real live personal assistant, find it extremely hard to comprehend that I make decisions in exactly the same way they do, with the same rights and responsibilities. I often wince when they ask me if I do what I want, like I live in a different world. I get so frustrated when I see people get so caught up in the mechanics of personalisation that they fail to grasp what it is really about, which is being normal.

Personalisation is now something which has very little to do with service users and much more to do with professionals and informal carers as the government tries to make social care 'a family matter' with little outside interference or protection. It feels like personalisation is a removal van whose contents are falling out of the back. It is therefore time to turn back and pick up the lost principals before we reach the final destination.