Mike*, who has a complex learning disability, had been on high doses of anti-psychotic medication for so long, that no one can remember when the drugs were first prescribed. The 52-year-old, who is non-verbal, was given the potentially harmful medication while living in a long-stay institution - the kind the government has been trying to move people from following the exposure of abuse at Winterbourne View.
Six years ago, when the man from the East Midlands moved into supported living his new support staff at social care provider, Perthyn, were unclear as to why Mike was taking the medication. It was likely that the drugs - the kind often criticised as "chemical restraint" - were contributing to his epilepsy seizures.
Staff worked to reduce the medication. Within six months, Mike went from two 50mg doses of antipsychotic Chlorpromazine every day to a single daily dose of 25mg. Six months of careful reductions later, he was off the drug entirely. During this process there was a small, intermittent increase in Mike's anxiety but staff supported him positively with more opportunities to meet with people and go out, both at home and in his community.
Today, Mike is more alert and has fewer seizures - the seizures that he does still have are shorter. He has also been discharged from psychiatric care and back to the support of his GP.
Mike is no longer one of the estimated 35,000 adults with a learning disability who are taking prescribed antipsychotic or antidepressant medication without appropriate clinical justification. As research from Public Health England reflects, thousands of people with a learning disability are taking unnecessary, and potentially very harmful, medications.
The issue of sedation and over-medication was highlighted in a recent investigation for Channel 4's Dispatches, Under Lock and Key. The programme focused on the use of restraint - chemical and physical - at St Andrew's mental health hospital, one of the biggest institutions of its kind in Britain. In addition, a new report from the National Audit Office into support for people with a learning disability underlines the need to move people out of long-stay mental health hospitals and back into communities. Channel 4 and the National Audit Office both highlight the risk that the 'transforming care' programme is failing the lives of thousands of disabled people with complex needs.
Strong relationships between social care, primary care and psychiatry services are absolutely essential if NHS England's programme to tackle the inappropriate use of medication is to succeed. Last year saw the launch of a joint pledge to tackle the prescribing of powerful drugs. The programme - 'Stopping the over-medication of people with learning disabilities, autism or both' (STOMP) - aims to increase medication reviews and appropriately reduce or withdraw people's reliance on unnecessary prescribed drugs.
At Perthyn, for example, the service manager responsible for Mike's supported living service, worked closely with Mike, his consultant and his family to reduce his medication. Staff not only reassured the family about his move from institutional to supported living, but allayed their concerns about the changes to his dosage. Mike's relatives were informed throughout the process and felt positive about the plans, which included thorough recording and reporting and frequent reviews of medication.
National Institute for Health and Care Excellence guidelines reinforce the importance of only using prescribed medication to control behaviour as a last resort, such as when therapeutic approaches have not helped within agreed timeframes or there is risk of harm. Unnecessary use of antipsychotics, antidepressants or both puts people at risk of significant weight gain, organ failure and even premature death. It is therefore a key contributor to the health inequalities people face.
The STOMP programme recognises that the use of these drugs often starts within the kind of assessment and treatment units that Mike was in previously, and continues unchecked in community primary care services. The programme also acknowledges that inappropriate medication can serve as a "chemical restraint" in place of the right care, support and treatments. As soon as powerful medication is first prescribed, clinicians and care providers, should be addressing how the medication will be withdrawn once the person has stabilised.
At Wilf Ward Family Trust, a social care provider in the north of England, the policy is zero tolerance to any form of restraint and that includes over- medication. "I want to know why PRN [pro re nata meaning 'when required'] medication is being prescribed" says chief executive Paul McCay. As McCay says, the PRN administration of drugs hands over responsibility for medication from prescribers to health and social care staff. It is a practice that has long been of concern in health and social care.
McCay goes on, "We are equipping our managers with the skills they need to challenge back if primary health care becomes a tick box exercise for the people we support." One manager at the trust who has responsibility for the quality and safety of local services, describes the good working relationship with local GPs: "We work hard to ensure people get a GP appointment so they get a full annual health check at the right time. ... We have built a strong relationship with our local GP who regularly reviews medication and signs off protocols. We are all clear on those protocols and decisions are regularly reviewed. Each week the service manager receives a call from the GP to check up on any issues." McCay explains that addressing health inequalities is an important theme for the trust. "We still have more work to do, and our focus is not yet fully embedded. But it is a key part of our health and well-being approach with the people we support."
Good relationships across health and social care enable providers to keep the issue of inappropriate medication in check - working with local GPs, undertaking audits and contributing to improvement programmes. Given the fact that thousands of people with a learning disability are taking unnecessary, potentially harmful, drugs, there is much more to do.
One important step would be to ensure that regular medication reviews (such as those carried by the Perthyn staff supporting Mike) are integral to the annual health check, an approach first introduced in 2008/9 by NHS England. These checks offer an effective "reasonable adjustment" that enables people to access health care and for GPs to play an important part in tackling health inequalities. But, according to NHS/Public Health England, only 43 per cent of people known to their GP to have a learning disability have received an annual health check, and of equal concern is that not all GP services offer the service.
NHS England recently took steps to further incentivise general practices and is set to increase the payment for each health check up from £116 to £140. In addition a new health check template has been developed for practices, which includes questions about the use of medication.
For the STOMP programme to succeed, as it must, it is essential that everyone working with people who have learning disabilities, autism or both prioritise the reduction of inappropriate medication. If staff and organisations do not do this, they risk compromising the quality of life and human rights, of people who rely on health, care and support services.
Stopping the unnecessary use of medication goes hand in hand with improving the quality of care for people with learning disabilities and autism. We need a radical change in the use of anti-psychotic drugs, something that has been left unchecked for decades. In reducing over-medication we not only tackle the long-standing health inequalities experienced by people with learning disabilities, but limit the opportunities for abuse.
*Not his real name.