Your Letters – August 2011

Panorama revealed care system abuses

Any decent person who saw the BBC’s Panorama programme on May 31st this year would have been appalled by the footage of people with learning disabilities in a hospital being abused by the staff employed to care for them.

There has been a swift response, and the hospital has closed, but this is not just about rogue staff and weak management, and it is not an isolated case. Rather, it is about the innate failings of institutional care.

The institutional care model that operates across the country is flawed, but there is an alternative, civilized, life-enhancing, proven and cost-effective alternative already offered by dozens of established care providers.

The Association for Supported Living (ASL) represents organisations that support about 30,000 people with learning disabilities, with combined annual budgets not far off £1 billion.

Each operates successful community-based, person-centred services, which work because they respond to the needs of the person getting the support. They are true partnerships, between the service user, the support agency, social care, commissioners, health and housing professionals, families and neighbours.  

For nearly 20 years government policy, recently reaffirmed, has instructed health and social services that people with learning disabilities whose behaviour is found challenging need individual, local, long-term support – exactly the kind that ASL recommends.

Many people with learning disabilities have complex needs and yes, they can challenge, and yes, providing good services for them requires concerted creative effort, but, as these real-life stories demonstrate, the right services offer people tangibly better lives.

• In 2005 Adel was living in an institutional environ­ment, where she was regularly restrained. After referral to a community support provider she now lives in a home she part owns, has reconnected with her family, and is never restrained because her challenging behaviour has subsided.

• Michael lived in a succession of emergency placements before ending up in a special unit, where three staff were allocated to him constantly, such was the fear of the threat he posed. He was restrained 180 times in one year. Six years on, Michael lives happily in a supported living service, where he is never restrained. His parents are delighted that he has “regained his life”.

• Kelly has a mild learning disability and mental health needs, plus a history of sexual abuse. She had a succession of emergency placements that broke down, was physically aggressive to others, and self-harmed. In a new community service, over the course of a year, Kelly learnt coping strategies to replace violence and is now much happier.

• Neil lived from the age of 16 to 21 in a hospital where his behaviour was deemed particularly challenging. He was physically restrained two or three times a day by up to five staff at a time. One thing that triggered Neil’s behaviour was changes to his support. A new community provider ensured continuity and consistency of staffing. Neil now has a better life with many interests, and rarely needs restraint. His family believe that “life has started again” for Neil.

ASL has collected evidence of many similar cases where people who challenge are offered high quality, cost-effective local services, and we will be presenting this evidence to the Government in the autumn. These services are not fanciful notions divorced from the reality of today’s constrained economic conditions. They achieve outstanding results, and are cheaper than institutional care:

• Adel’s community-based service costs £70,000 a year less than her previous placement.

• Michael’s current service saves £100,000 a year.

• The cost of Kelly’s service fell from £120,000 a year to £42,000.

• Supporting Neil in the community is £40,000 cheaper than keeping him in hospital.

Research published last year using data from the Healthcare Commission found nearly 1,900 people with learning disabilities in institutional care. We know that these people are in environments where they are vulnerable because the model of care is inadequate.

Panorama, however shocking, was not a surprise. It simply revealed a replica of the scandals that dogged NHS mental handicap institutions in past decades. So we call on the Government, as a matter of urgency, to compel commissioners to set a timetable for the provision of alternative, community-based services for all of these people.

ASL is willing to help, and will share its experience with anyone committed to developing community services like the ones described in this letter – services that, we assert, offer a level of care commensurate with what civilized society expects, and that save the country money.
Kim Foo, Chair, Association for Supported Living, by email

Mercy Killing - I'd do the same thing again

I was saddened by Les Harrison’s letter in the June issue of Disability Now (“Assisting is no crime”, Letters, p.32).

I worked as a trained nurse for 39 years until my retirement in 1986. In the 1950s I was a Queen’s Institute District Nurse. At that time, there were no hospices or palliative care facilities for cancer patients, many of whom I helped to nurse. Some were sent home from hospital, usually inoperable, with dreadful bedsores and in terrible pain. We attended twice a day, administering morphine or pethidine in increasing doses, and changed their dressings. We bathed them and did our best to leave them comfortable.

When the time came that drugs gave no relief and their agony was unbelievable, it was arranged that we would meet up with the GP at the patient’s bedside. With the consenting family present, I would comfort the patient with whom I had lovingly bonded, while the doctor administered a fatal intravenous dose.

This seemed humane to me, and even though I am a practising Catholic, I’d agree to the same procedure now if I were still nursing.
Mrs. P.E. Siemens, Ringmer, East Sussex

Parking fees for all

While I agree with Paul Butt ("Make all bays equal", Letters, Disability Now, June 2011, page 33) regarding all parking bays being wider, I would go further and charge parking fees all round.

This would do away with the need for badges and eliminate the ridiculous amount of misuse which is ever present with anything that's free. The added revenue could be used to increase the size of car parks where applicable.

I'm sure there'll be plenty of opposition to my idea but this is not a wind-up. I'm a wheelchair-user and driver myself.
Mick Higham, Mansfield, Notts