People with Learning Disabilities (NHS Treatment)

Chris Skidmore Excerpts

Wednesday 14th July 2010 Westminster Hall

[Chris Skidmore (Kingswood) (Con)]

As the secretary of the all-party group on disability and a member of the Select Committee on Health, I have a dual interest in this debate. I am also a member of the all-party group on learning disability. I am sorry that I could not attend yesterday’s AGM; it sounds as if it was a fascinating event.

I thank the right hon. Member for Coatbridge, Chryston and Bellshill (Mr Clarke) for calling the debate, which is clearly necessary. If I repeat any of the points that he made so eloquently, it will be only because they need to be driven home. The debate highlights some current failings in the NHS with respect to people with learning difficulties. As the right hon. Gentleman said, there have been several reports on the issue in recent years. The Disability Rights Commission’s report, “Equal Treatment: Closing the Gap”, published in 2006, showed that although people with learning difficulties were more likely to develop conditions such as obesity and respiratory diseases, they were less likely to receive adequate care, treatment and health checks.

In the following year, as the right hon. Gentleman also mentioned, came Mencap’s report “Death by indifference”. That seminal study highlighted some of the failings of the past several years and showed that six people with learning difficulties had died prematurely owing to discriminatory care. Yet after those reports were published, and despite moves towards dealing with the situation, the most recent survey by Mencap, which was released in June—again, the right hon. Gentleman referred to it—showed that half of doctors and a third of nurses had witnessed a patient with learning disabilities being treated with neglect or a lack of dignity, or receiving poor quality care. Those statistics are clearly unacceptable.

What can be done? The right hon. Gentleman has already referred to the issues that we need to address. I shall probably repeat some of what he said, and I hope that he does not mind. To my mind, the first issue is training for professionals in the NHS. There is clearly an institutional failure to make adequate provision for people with learning difficulties in the NHS, despite the fact that they receive £1.7 billion of NHS money. The Mencap survey highlighted the training issue; it found that 53% of doctors and 68% of nurses felt that they needed specific guidelines on how to care for people with learning difficulties, and how treatment should be addressed to them, to meet their needs. There is clearly a gap that we need to examine in closer detail.

I welcome the plans in the White Paper that has just been published to end the top-down managerial approach and the current centralised funding of education and training, because previously the multi-professional education and training levy was not accountable in relation to the amount of training and continuing professional development that it provided. The White Paper sets out welcome plans to give employers greater autonomy and, above all, accountability. Accountability is what we need, because training has been available but there is no way of showing that it works. We need to get back to a local level, which is what the White Paper sets out to achieve, so that there will be greater professional ownership of the quality of training. I welcome that accountability and recognise that accountability at local NHS organisational level must also ensure that people with learning difficulties are treated adequately.

The second issue that I want to mention is the broader one of communication. That is at the heart of treatment for people with learning difficulties. The question is how to cross the communication barrier between professionals—doctors and nurses—and people with learning difficulties, who often cannot express their needs, which may be very individual. One of my constituents was recently rushed to the Bristol Royal infirmary on a weekend. He had a procedure on his heart and a doctor explained his condition to him as if he were communicating with a normal member of the public. That approach was clearly inadequate for someone with learning difficulties. The nurse then presented him with some complicated leaflets, which he could not understand. There was no co-ordination with his carer at NHS level—or certainly not at the acute hospital level—and that led to a man who was already very sick being further distressed and scared.

It is in that context, to which the right hon. Member for Coatbridge, Chryston and Bellshill referred, that the role of learning disability liaison nurses is crucial, for the support of patients, families and those who support people with learning difficulties. It is not yet clear how many such posts exist. In my area of Bristol, which has the Frenchay and Southmead hospitals, there are only two. However, I was surprised to discover that that is pretty good by national standards.

I understand that interesting new moves are under way towards developing the role of liaison nurses, and in particular that St. George’s healthcare trust in south London has gone further, by appointing a nurse consultant in learning difficulties. The success of that probably says something about the need to examine the NHS staffing structure in relation to people with learning difficulties. The holder of that nurse consultant post remarked:

“This job would not have had the impact it has had if it was not at consultant level.”

That shows an interesting divide, by which those with learning disabilities are often dealt with at a nursing level, when to get the impact that is needed it is necessary to go higher up the chain. Clearly, there is a need to explore the greater use of liaison nurses, the employment of a number of such nurses, and what happens at local level.

The White Paper gives us much encouragement about the personalisation of services, and, above all, the determination to put patients at the heart of the NHS. I note with interest that one of its principal aims is to ensure that shared decision making will become the norm. To use the familiar maxim that we use in the all-party group on disability, “No decision about me without me.” Sadly, we know that for some with learning difficulties that will be impossible.

We already know about the difficult ethical issues, which have been reported in the national media, in respect of those with learning difficulties having treatment forced on them. For instance, a lady with cancer was forced to undergo an operation. I do not want to touch on the ethical issues today, but such cases clearly raise questions about the relationship between patients and professionals. Given the White Paper, the greater personalisation of services and putting patients at the heart of the NHS, we must ensure that patients with learning difficulties are not left behind.

Personalised care that reflects individual health care needs is just as relevant for those with learning difficulties, if not more so. If we want to realise the promise of the White Paper—I note that it is also committed to promoting equality—we must understand the importance of health outcomes for those with learning difficulties. Moving from targets towards outcomes will benefit those with learning difficulties, as some of their problems need to be considered over a greater period, and hospitals cannot always deal with them in a single session. However, those outcomes are not being met, and that reflects on society.

Above all, it is important to ensure that the most vulnerable, particularly those with learning disabilities, receive the greatest care. In that regard, the introduction last year of incentive payments for GPs to carry out annual health care checks for those with learning difficulties was welcome. However, there is clearly a problem. Take-up has risen by about 60% between 2008-09 and 2009-10, yet still only half the money allocated for such checks by doctors is being used.

The White Paper and Government statements show that giving GPs greater control over their budgets will circumvent some of the centralised mechanisms. GPs will thus know exactly what tailored care is necessary for their patients, including those with learning difficulties. I hope that GPs will take the opportunity to expand the use of health checks within their allocated budgets. That will ensure that prevention is at the heart of treatment.

Above all, the issue is about prevention. As the right hon. Gentleman said, those with learning difficulties and disabilities are often at greater risk of illnesses that could have been prevented; they could avoid reaching the acute hospital stage, which can often be confusing and stressful, early in their treatment. Personalised care will ensure that GPs monitor patients more carefully. I hope that having annual health care checks in place will ultimately prevent people with learning difficulties from reaching the stage in the NHS that they find so disturbing—the stress of late diagnosis.

Finally, I echo the right hon. Gentleman’s comments about the national health service. We are not here to criticise the institution. We share a common cause; we wish to make it better and more effective for those with learning difficulties.

[Mr Gregory Campbell (East Londonderry) (DUP)]

I thank the hon. Gentleman for giving way. He touched on the excellence of the national health service. Does he agree that we must try to ensure best practice throughout the United Kingdom, particularly in devolved regions, and that we should not have patients in one part of the UK demanding of the health service a level of service that they see elsewhere? We should aim for equality and best practice across the UK.

[Chris Skidmore]

I agree with the hon. Gentleman. We are learning that health inequalities throughout our nation are extremely profound. Only by dealing with health inequalities can we raise the standard of public health in the nation as a whole—something that applies to many of our public services. Having a greater drive towards the localisation of services and the personalisation of care will get us to the stage where prevention is at the heart of NHS treatment. Through prevention, we will achieve greater equality; it will iron out some of the inequalities that we see in our most deprived communities.

The principles on which the NHS was founded are still relevant today, and we agree that that must remain so. However, although free health care at the point of access should be available to all, based on need, we must look harder at how to ensure that the needs of the most vulnerable are met. That includes those with learning difficulties. More clearly needs to be done, but I hope that we will be able to achieve it.