Hansard

The new learning disabilities strategy, “The keys to life: Improving quality of life for people with learning disabilities”, was published in June of this year. It is the second national learning disabilities strategy for Scotland, and we are the first part of the United Kingdom to produce a second strategy of that nature.

As a nation, we can be proud of some of the changes that we have brought about in the quality of life for people with learning disabilities since “The same as you? A review of services for people with learning disabilities”, our original learning disability policy, was published in 2000. It was highly successful in shifting the balance of care to support more people to live in their community, and it led to the historic closure of more 1,000 long-stay hospital beds that many people called home for decades. It also led to improved day opportunities and created employment and meaningful activities for those with a learning disability.

The human rights of people with learning disabilities are at the heart of the keys to life strategy. I believe that everyone should have those rights and freedoms and that our statutory agencies should be transparent in demonstrating how they respect and uphold human rights in all their policies and practices. People with learning disabilities need information so that they know what their human rights are.

Since “The same as you?”, people with learning disabilities tell us that they are generally more accepted and valued in their communities than they were before and that, rightly, they are seen as people who can contribute to Scottish society in very positive ways. However, to be truly accepted in society means being treated equally and fairly in other ways. It means having a health service that is committed to changing the fact that people with a learning disability can still die 20 years earlier than the general population—that is simply unacceptable. Their lives and life choices matter as much as those of any other citizen.

We must make addressing the stark health inequalities faced by people with learning disabilities a national priority. Much of the emphasis in the 10-year keys to life strategy is on health issues so that we make the required change. It is about improving health practice and outcomes so that people’s human rights are respected and upheld. In my view, if we do not achieve that shift, we will have failed as a society to ensure that people with learning disabilities enjoy the same rights as everyone else.

We all want people with learning disabilities to be healthier generally. For that to happen, those who work in healthcare need to better understand the health needs of people with learning disabilities. We also want all health professionals—not just those who work in specialist learning disability posts—to know how the health needs of people with learning disabilities can differ from those of the general population.

We already know a lot about the health needs of people with learning disabilities. For around four years, the Scottish Government has led a national learning disability health inequalities network, which consists of senior health professionals who come together to identify ways in which we can tackle those stark health inequalities more effectively. Through their work, they have developed projects that are about self-care, prevention, awareness raising and training. For example, the take 5 programme in Glasgow is an effective way for adults with learning disabilities to lose weight by having a personalised diet and by increasing exercise. Another good example is the NHS Western Isles learning disabilities collaborative, which has an electronic health assessment that is linked to general practitioner health records so that individuals get regular health screening.

However, I want to build on the progress that has been made in recent years, which is why I have commissioned the Scottish learning disabilities observatory to provide us with the evidence and data that are required if we are not only to take action on the basis of improved understanding, but to demonstrate clearly improvements from those actions. To assist us with that, I intend to develop a health improvement, efficiency and governance, access and treatment—HEAT—target to capture the evidence and data that will help to support the transition. The observatory is also committed to help us to better address the causes of unnecessary deaths of people with learning disabilities. That work will help to inform the interventions that we need to take forward in the years to come to address the issue.

The role of primary care is integral to our success, which is why an early task will be to explore how the GP contract in Scotland can best meet the needs of people with learning disabilities. That work will include an exploration of the possibility of the reintroduction of an enhanced service.

Another aspect of the primary care role will ultimately be to develop annual reporting of trends in the management of long-term conditions of those with learning disabilities. I recognise that having to go to hospital or attend another healthcare setting can be an anxious time for anyone—often more so for people with learning disabilities. Small things matter, such as having both the emergency care summary and the key information summary to meet the information needs of people with learning disabilities who access healthcare services.

It is essential that services work together to make sure that people with learning disabilities get the right level of support when they are in hospital and have access to the right medical services. Most important, people with learning disabilities should get the same treatment as the general population.

People with profound and multiple learning disabilities face particular challenges in their daily lives. They need simple things such as appropriate toilet facilities. It is simply unacceptable for families to have to change their daughters or sons on toilet floors. That is undignified and unhygienic, and it involves heavy lifting by the carers, which has the potential to cause serious damage to their health. Sometimes families opt to stay at home, with increased isolation and a lack of stimulation as results. That is why one recommendation in the new strategy is to extend the number of changing places toilets in Scotland, which are designed to allow access for all. I thank the Profound and Multiple Impairment Service—PAMIS—for the tremendous amount of work that it has done over the years in the area and the work that it intends to do in assisting us to address the issue in the future.

A challenge for others, and one that I am committed to addressing, is the fact that some parents and carers of people with complex needs have to visit their children in facilities outwith Scotland. I appreciate how difficult it must be for them to maintain regular contact and I recognise that it can be upsetting and distressing for them and their children. Everyone deserves to live near family and friends. That is why we have established a group to look at how we can better deliver services for people with complex care needs more locally, here in Scotland. In other words, where we can, we will bring people much closer to their own home to meet their care needs.

Underpinning all that activity is the need to ensure that people with learning disabilities and their families know what is available to them. Alongside that, it is important that they are confident that the support that is available to them is of a high quality. We already have learning disability quality indicators, and a review of general health services and specialised learning disability health services will help us to ensure that NHS Scotland is fully compliant with the quality indicators that we have laid down.

On-going objective scrutiny of progress in the area is key to success in making further progress, which is why I have asked the Care Inspectorate and Healthcare Improvement Scotland to ensure that strategic commissioning—both process and implementation—are examined as part of their overall inspection of services for people with learning disabilities.

So far, I have concentrated on the anticipated positive changes in health, but life is about much more than that. At the heart of the keys to life strategy is the principle that individuals should have greater choice and control over their lives. The same principle is central to the Social Care (Self-directed Support) (Scotland) Act 2013, which will come into force next year. However, the new legislation is more than just the act itself. We need to challenge our local authorities to meet the aspirations that are set out in the 2013 act and the strategy.

We need to support professionals to engage with self-directed support as part of their core practice, and we need to ensure that we provide clear and unambiguous guidance to emphasise that support is about a whole variety of lifestyle issues and that we reform the commissioning processes that our local authorities use. At a very basic level, we need to tackle the lack of awareness of the options that are available to people under the new legislation. The benefits of the self-directed support legislation are very clear, and councils and providers have an important role to play in ensuring that the legislation is effectively taken forward.

“The same as you?” encouraged local authorities to review their day care services, and we have seen considerable change in the way in which those services have been delivered in the past 13 years. A range of models is now in place across Scotland. Some of those models involve little or no contact with day centres; others involve a balance of centre-based and community-based activities. However, I am aware that, for many people, day centres will still play an important part in their support arrangements, especially people who have more complex needs and people with profound and multiple learning disabilities. It is still essential that services and staff continue to develop personalised care approaches that enable people to make choices and follow activities that are meaningful to them, including the choice of being able to use a day care facility.

I know that living an independent life is important to people with learning disabilities. That means having the same choice and control in their lives that others have.