1. Message from Baroness Jane Campbell
I’m really disappointed not to be with you all this afternoon.
I am but a stone’s throw away in St Thomas’s hospital – we can
probably wave at one another if you’re so inclined.
If the Ward Sister would have allowed it I would have relocated the
seminar to the hospital, but unfortunately she is one of the very few I
cannot persuade. I have met my match and I’m doing what I’m told,
which is such a surprise to everyone including me!
I am though relieved and delighted that Baroness Thompson has kindly
stood in for me, she I know, feels as passionate about this inquiry report
as I do. You are in very capable if not Olympian hands.
I’d also like to thank Hywel Frances for his chairmanship of the
Committee and this inquiry, my fellow committee colleagues, the clerks,
the special advisers and critically all of you who submitted evidence,
without which there would be no report.
You will hear all about the report today, so I won’t dwell on the details,
but want to say a little about what the report is ultimately about.
The photo on your screen is of my friend Rikesh.
Rikesh is 21 years of age, with his whole life ahead of him.
A disabled young man, he had secured optimum control over his own life
using direct payments to pay personal assistants, one of whom was his
own step-mother. He has a qualification in graphic design and was
about to start his first job working on an Olympic graphic design project.
As your Chair today will tell you, the Olympics have opened up a window
of opportunity for disabled people to contribute which includes paid
work.
Last August he was admitted to the Lane Fox specialist respiratory unit
at St Thomas’s hospital where an emergency tracheostomy was
performed.
This is a significant procedure, requiring recovery and adaptation, but
Rikesh was considered well enough to return home at the end of
September to continue with his life. This was around the time we met
when I was admitted with a chest infection. Despite what he had been
through, he was bright and optimistic about his future. And I had no

2. doubts he would adjust and would be the opportunity to work in the
Olympic project was still possible.
When I was re-admitted to hospital in January, I was shocked to find
Rikesh still there. Had his health declined?
No. He remained in hospital because the tracheostomy saw what had
been defined as ‘social needs’ for support become ‘health needs’ and as
a consequence he was no longer allowed to arrange his own personal
assistance. Instead, responsibility regarding his support passed from
social services to his local PCT.
At first they suggested he move to a nursing home for older people.
Luckily, his stepmother had the determination to involve solicitors and
they backed down.
Rickesh ideally wanted to continue employing the personal assistants he
had before going into hospital, but the PCT would not allow this on
health and safety grounds. They insisted on retaining control over the
employment of his personal assistants. It has taken until the last few
weeks for them to have arranged this and they are now training the staff
– training which the hospital could have given to his existing personal
assistants, who he has now lost.
He is still in the Lane Fox Unit. He has been there day after day, night
after night in a hospital ward for over 6 months. An intensive care ward
where people frequently die and the noise of machinery making sleep
only for the very tired or very ill possible. He does not even have the
support he needs to leave the ward for a coffee or a breath of fresh air.
He has only survived this due to his resilience and patience, but it is
clear to me his confidence and mental health is now very fragile. A life
barely lived for days, weeks and months on end. He hopes to leave
sometime in April. I fear for him as my experience, knowledge and this
inquiry tells me something different. I can only hope that I’m wrong.
Britain may no longer routinely place disabled people in institutions, but
that does not mean that it does not institutionalise disabled people
through bureaucratic failure, red-tape and a lack of support.
The needless human cost is obvious. The needless financial cost to the
taxpayer of Rikesh having to stay in hospital is already in the region of
£225,000 and counting.
Such waste and inefficiency is shocking at any time, but especially so in
the context of the reforms and spending cuts presently being

3. implemented. The UN Convention makes clear that countries should
progressively realise disabled people’s human rights within the
maximum of their available resources. We are clearly failing to do so if
we allow almost a £1/4 million to be wasted in such a way. For those
who say independent living is an unaffordable ideal, I say that having
control over our own lives is a way to cut through such waste.
Independent living isn’t just about disabled people’s human rights – it
also make sound economic sense as the basis to re-organise our public
services and supports.
Since leaving university I have had the privilege of being involved in
helping develop the complex weave of legislation and public policy
necessary for disabled people to live in, and be part of, their community.
Countries around the world look to the UK as a model of good practice.
Progress for sure, but in the face of the storm of reforms and spending
decisions we are presently faced with, I worry that our achievements
may be built on sand.
If my local authority cuts my care package or demands that -like Rikesh-
I transfer to NHS care (because they regard using a ventilator as the
trigger for health services), I lose control of my life. I might have to leave
parliament, or give up work altogether. Yet at present I am only a few
bureaucratic decisions away from returning to the inequality I endured at
age 18. It wouldn't take long to transform all my relationships with my
colleagues, partner, family, friends into one which gives little or nothing
to anyone. Everyone loses.
The fact that all this could happen without my consent hangs over me
and thousands of others. It is powerlessness in the face of bureaucracy.
This is why our inquiry report could not be more timely. Especially, as
human rights is such a topic of discussion these days. For it well help
remind us that dignity, autonomy and participation are all values and
principles that will realise the ambitions of this report and Rikesh’s
future.
We cannot achieve rights to independent living if the support we require
and our opportunity to assume control over it remain entirely at the
discretion of national and local government. The UN Convention on the
Rights of Persons with Disabilities makes clear that government has a
duty to ensure that disabled people enjoy this right.
I hope this report gives all of you in the room and beyond a powerful tool
to work with all the change agents that can make or break disabled

4. people’s right to independent living. With your help, Rikesh and many
others like him can look forward to a future that I have enjoyed.
That’s why I want to dedicate this report to Rikesh. I think we would all
agree that he should not only enjoy his basic human rights, but that
through doing so he should be able to realise his dreams.