People with learning disabilities are entitled to the same high quality healthcare as other patients, but serious cases of abuse and neglect suggest the NHS is far from meeting its obligations. Kaye McIntosh reports on the work now under way to turn this around

The Metropolitan police was torn apart by accusations of institutional racism after the bungled inquiry into the death in 1993 of Stephen Lawrence.

Yet allegations of institutional discrimination against people with learning disabilities have left the NHS largely unscathed - and certainly free from the sort of public scrutiny faced by the Met.

One damning report after another has shown how this vulnerable group is failed by the NHS; their healthcare needs neglected, their treatment all too often abysmal.

Now ministers are promising that is all about to change, with a detailed delivery plan in place to ensure all parts of the service will have to act to improve care.

Mencap's 2007 investigation Death by Indifference highlighted six cases where people had died because of poor treatment while in NHS care. The cases included that of 26 year old Emma, who was refused treatment or even pain relief despite a diagnosis of cancer, and nine year old Daisy, who went to hospital with a tooth infection and died three weeks later from septicaemia.

In 2008 an independent inquiry for the Department of Health by Sir Jonathan Michael confirmed Mencap's findings. It found "appalling examples of discrimination, abuse and neglect across the range of health services".

The health service ombudsman is due to release a further investigation into the cases highlighted by Mencap imminently.

DH national director for learning disabilities Anne Williams admits: "The department accepts people with learning disabilities are being discriminated against. The Michael inquiry found there was widespread inequality of access."

Yet the law is clear. Both the Disability Discrimination Act and Human Rights Act give people with learning disabilities the same rights as everyone else to have access to healthcare and to be treated with respect. Since 1999 providers have been required to make "reasonable adjustments" to the way services are delivered in order to meet the needs of disabled users. But the Michael report found healthcare staff to be "unfamiliar with the legislative framework" and added: "There is insufficient attention given to making reasonable adjustments to support the delivery of equal treatment."

Someone else's concern

Rob Greig, former national director for learning disabilities, says the NHS sees learning disability as a matter for councils and specialist services.

"Twenty years ago the job was closing long stay hospitals and then people thought the NHS had nothing to do with it, it was a social care issue. There was a lack of clarity from government about what the role of the NHS was until [the first] Valuing People report [in 2001]."

Now ministers are promising action. Valuing People Now - a three year strategy for people with learning disabilities, launched in January, lays out a framework for change at all levels of the service - from the DH and national leads to strategic health authorities, primary care trusts, acute trusts and health professionals on the ground. It throws a spotlight on the role of the NHS in commissioning and providing good quality general healthcare that makes reasonable adjustments for people with learning disabilities. Care for the affected 1.2 million people will be transformed as a result, it says.

Mencap head of campaigns and policy David Congdon welcomes the strategy.

"It says all the right things but the challenge now for the NHS is how it delivers on it. How do we get across to 1.3 million members of staff that they need to value the lives of people with learning disabilities, treat them with sensitivity and ensure that they get good quality care?"

The strategy is clearly intended to make a difference. It comes with a detailed delivery plan and pledges an overhaul of how the NHS treats those with learning difficulties, including improved training for health professionals, annual health checks for patients and reform of local learning disability partnership boards to give them real teeth.

The DH will set up a confidential inquiry (similar to those that investigate maternal and child health or suicide) to investigate the premature deaths of people with learning disabilities. A new public health observatory to provide national and local data will be commissioned and the national director for learning disability will produce an annual progress report.

Healthcare Commission learning disability lead Fiona Ritchie is optimistic.

"I think board directors and chief executives do recognise the priority they need to give to learning disabilities," she says. She adds that there are "pockets of good practice".

"It is going to be down to the NHS, from the secretary of state and [NHS chief executive] David Nicholson to SHAs and PCTs treating this as a priority and in the way they monitor performance," says Mr Congdon.

"If you are an NHS chief executive, you are judged by key performance indicators. Will you be judged the same way if you don't get it right for people with learning disabilities?"

There are currently few performance indicators for learning disabilities. Annual health checks are up to local discretion and delivered by a directed enhanced service that GPs can opt in or out of helping to deliver.

However, the DH has promised to publish a statement by this spring setting out how existing performance frameworks relate to provision of services for people with learning disabilities. Ms Ritchie says the Healthcare Commission is discussing creating an indicator that would apply to acute trusts and PCTs.

"We are at the very early stages but we have started discussions that will go out to consultation," she says.

PCTs had already been instructed to make reasonable adjustments to general health services to cater for people with learning disabilities in the operating framework for 2009-10 - the first time learning disabilities had been mentioned in the framework.

The DH has also promised to produce a guide to world class commissioning for learning disability health services. As part of the joint strategic needs assessment, PCTs and local authorities will have to include best practice in needs assessment and engagement with service users, families and carers and local learning disability partnership boards.

Mr Greig, now chief executive of the National Development Team for social inclusion, says: "In many places PCTs are not clear about the importance of the NHS role, so are neither commissioning specialist services well nor ensuring that the generic healthcare they do commission for the population is inclusive."

For instance, in some PCT contracts, learning disability specialist health services are lumped in with mental health services, with no clear budget, outcomes or monitoring.

Barbara McIntosh, co-director of the patient rights charity the Foundation for People with Learning Disabilities, warns it is action that is needed, not more pledges.

"It's worth remembering that the original Valuing People was greeted with much fanfare and included a delivery plan, but more than seven years later implementation is still patchy."

And it is clear from talking to health professionals and families that the sort of horror stories highlighted in the Mencap report are still happening (see below).

Diagnostic overshadowing - interpreting everything about a person as if it is caused by their disability - remains a real problem, says specialist nurse Catriona McIntosh.

"Often people don't recognise that people with learning disabilities are in pain, even when they are displaying the same behaviour that in anyone else would be regarded as a symptom of pain," she says. "Instead it is labelled as 'challenging behaviour' and a reason for failing to provide healthcare, as these patients are regarded as 'just too difficult'. There is also an idea that people won't comply with treatment, so it's OK to leave them without it.

"People don't try to understand patients with communication difficulties. All the knowledge and evidence and best practice is there... yet nothing has ever changed."

Promising signs

The Foundation for People with Learning Disabilities does, however, believe the new strategy shows signs of "learning from the past", particularly by giving prominence to the voices of people with learning disabilities and their families.

And Ms Williams says that this time, senior NHS managers will be held accountable.

"It is true that the chief executives of acute trusts and PCTs have been able to ignore the needs of people with learning disabilities. In some places people have never been invited for cervical smears or registered with a dentist, for instance. We have to be proactive now. The health service should be available to all and that includes people with learning disabilities and those with the most complex disabilities. We need a culture change and that is what we are starting to see. People are focusing on this in a way they haven't before."

Progress will be monitored, she adds, so it will no longer be possible for executives to ignore the issue.

The DH has set up a delivery group, including senior policy leads and national directors. SHAs will be held accountable for ensuring delivery of the "better health" outcomes of Valuing People Now and nine regional learning disability programme boards including disabled people and their families will be set up to link local partnership boards to the national learning disabilities programme board.

But John Morgan, chief executive of the Ridgeway Partnership specialist learning disability trust, is cautious about the ability of partnership boards to deliver.

"They are not statutory bodies or decision making bodies and there is a fundamental problem if PCTs or local authorities or providers are not playing ball. Partnership boards have been very successful at involving carers and people with learning disabilities but have they changed services?" he asks.

He welcomes the recommendation that local partnership boards should be led by the local director of adult social care and regrets it is not a "must-do": "You need someone who is a key decision maker but that is not always the case."

Will the good intentions of the new strategy and delivery plan put a stop to the sort of horrifying cases in Death By Indifference?

"Nobody can ever say that will never happen again but we are optimistic," says national director Ms Williams. The annual health checks and requirements on PCTs and SHAs will make a difference this time, she insists.

Mr Greig adds: "Despite the gloomy picture described by the Michael report, there is a significant body of good practice that we can learn from across the country. Individual practitioners, managers and commissioners have been doing innovative things that are improving people's health.

"The problem has been that they have achieved progress despite the system - not because of it. This is the culture that has to change."

One family's story

Bill Simpson* has cerebral palsy but used to be mobile and able to talk. He lived in supported accommodation, where there were no qualified health or social care professionals on site.

When Mr Simpson's health began to fail, it took 18 months of distress and his reluctance to eat or drink before he was diagnosed with gall bladder disease and a further 18 months before he was operated on.

Although the operation was a success, during a routine visit to his home in January his family discovered him close to death from dehydration. They called an ambulance and Mr Simpson was rushed to hospital.

His subsequent care was good in many respects, reports his brother Patrick, but one senior member of staff told the family that if Bill did not want to eat, that was up to him.

"The Disability Discrimination Act says people with learning disabilities should not be discriminated against but to say his family cannot feed him or give him a drink is terrible," says Patrick Simpson.

"We were trying to syringe fluids into him when someone came and tapped me on the shoulder and said 'you can't do that'. I said, you're joking, he is critically ill. They wouldn't let us administer anything to help my brother, who was dehydrating to death."

Thankfully, Mr Simpson has now recovered, although he lost a lot of weight and is no longer fully mobile.

His family fear that if he becomes ill again, it is entirely possible no one but they will even notice, let alone ensure that he receives the medical treatment anyone else would be entitled to as a matter of course.

*Names have been changed

Human rights best practice

The learning disabilities directorate at Mersey Care trust is a pilot site for a human rights in healthcare project. It has produced a human rights questionnaire for inpatients, a risk management tool for PCTs and trusts and a trust-wide human rights strategy.

Trust equality and human rights lead Meryl Cuzak says a review of policies and procedures has led to major changes. For example, inpatients who are not detained under the Mental Health Act now have key fobs that allow them through locked doors. Staff also realised they couldn't take a porn magazine from one patient - it was kept in his own room and he had as much right to his possessions as anyone else.

"If you are restricting someone, you have to ask is that proportionate and legitimate under the Human Rights Act," says Ms Cuzak. Even where it is legitimate and in proportion, staff should be planning for the future so as to ensure restrictions such as patients being observed while taking a bath are continually reviewed.

Training sessions in human rights have been run for all staff, as well as with people with learning disabilities and their carers. Patients are also being trained as peer supporters, so they can assist those who have profound communication difficulties.

Each directorate has to embed human rights in its business plans, which are currently being drawn up.

"It's not about creating new work," says Ms Cuzak. "It's often about looking at what we are doing already and being more explicit about human rights."

HSJ's Developing Learning Disabilities Services conference is on 24 February. For details visit hsj.co.uk/conferences