People with Learning Disabilities: Health Inequalities

Baroness Emerton Excerpts

Thursday 18th July 2013 Lords Chamber

[Baroness Emerton]

My Lords, I thank my noble friend Lady Hollins for this timely debate and for her contribution over the years on the issue of learning disabilities. I declare an interest as a retired general nurse. Not holding any qualification in mental handicap, as it was then referred to, I have limited experience with learning disabilities, mainly associated with relocating patients from the large hospitals in the 1970s until the late 1980s. However, that experience was one that has stayed with me in terms of demonstrating that people with learning disabilities and their families are a group who require a range of specialties to come together to ensure that their quality of life is the best possible.

Although this debate is asking the Minister what steps the Government are taking to address health inequalities, it is difficult just to debate health, as has already been illustrated today, because so much is dependent on the part played by education, social care and families. The opportunity has now been given to us, with the new Health and Social Care Act and the Care Bill, to develop healthcare pathways further. We should take this opportunity to ensure connection and communication through the education system, social care and specialist mental health care and that learning disability staff are involved in the total well-being of the individual and the family. Otherwise it is likely that there will be gaps which, in turn, may be detrimental to the general health of the individual with the learning disability.

It is now 65 years since the NHS was introduced with the assurance of free care for all at the point of delivery. During those 65 years, we have seen many developments for those suffering a learning disability, which have come step by step and usually following the unfortunate findings of inquiries into poor care, such as in Ely, Farleigh and Whittingham—all large hospitals that were found wanting in the delivery of care. In the 1970s, we abolished long-stay large hospitals and moved patients into the community, which was a big step towards a pathway for each individual that set a programme of care according to their needs. However, even within the 20 years since that move, we have cause for concern about small units that have failed in their delivery of care.

This confidential inquiry into premature death provides the opportunity to address the pathway for learning disabilities and for health and social care professionals, support workers, educationalists and families to contribute to the development of a meaningful, holistic pathway for every individual person with a learning disability. This surely demands a culture change and leadership, as well as offering a learning opportunity for all health and social care professionals and general educationalists to understand the philosophy of caring for those with a learning disability. It requires good communication links between all of those, with each of them understanding the overall philosophy and strategy of an integrated pathway for the individual. It is clear that this would be a large piece of work and would take time to be achieved. It will require all of the disciplines to be involved, as well as the families, who we know have had to fight a long battle to break down the barriers between all the involved agencies. There needs to be shared ownership of that responsibility—everyone has to ensure that the pathway is high quality and leads to people living as normal a life as possible with the appropriate support and with regular physical health checks.

Coming back to the confidential inquiry, I would make four points. The first is about health records, which has already been mentioned in detail by the noble Baroness, Lady Tyler. I am sure that in this day and age it is not beyond the wit of any of us to see that it would be possible to get a health record that can not only integrate the issues relating to the handicap but attach a personal profile to the health action plan that could be implemented and given quickly to the person and to the family.

Secondly, there is advanced healthcare planning. I suggest that the Government need to give further guidance once long-term problems are diagnosed. There should be a trigger for the plans to be instigated and a risk assessment and a crisis-point plan drawn up. These health plans could easily be put together as long as there is communication between all aspects and that the medical side is aware of the way forward.

My noble friend Lord Rix has already mentioned palliative care and the dreadful time that the patient in Lewisham experienced. The confidential inquiry identified some problems with end of life care. It is clear that palliative care teams need to be supported during the time that palliative care is being provided to a learning disability patient. A specialist learning disability nurse should be available to those teams when this is required. At least two patients in every hospital have a learning disability. Of these some may have profound multiple learning disabilities. The role of the registered learning disability nurse is important in giving guidance in hospitals on the specialist support of patients. Can the Government ensure that workforce planning outcomes include a calculation for the roles of nurses qualified in learning disabilities to be available for such teams?

If the noble Earl agrees that this should be the way forward, what steps will the Government take to ensure that that NHS England, Public Health England, local authorities and professional regulators develop the curriculum and standards for health and social care professionals and general educationalists, Healthwatch, well-being boards, and charities such as Mencap to meet the requirements for the best possible pathway for healthy living within the capabilities of the individuals suffering a learning disability and their families? This would include a model to maintain general good health and the reduction of the rate of premature deaths as is suggested by the inquiry.

If the philosophy and strategy are clear for the person suffering from a learning disability, we can then be assured that all aspects of their life will be taken care of, with the support in place where necessary. This in turn will be effective for other members of the family who, over time, as experience tells us, have had to overcome tremendous difficulties through sheer lack of professionals understanding the situation being described or the damage that can occur, including breakdown to the family unit.