Disability Services

Lord Macdonald of Tradeston Excerpts

Thursday 10th January 2013 Lords Chamber

[Lord Macdonald of Tradeston]

My Lords, I, too, am grateful to my noble friend Lord Boateng for giving us this opportunity to discuss the problems of the estimated 1 million disabled people from black and minority ethnic backgrounds. As he has made clear, the Scope report makes a persuasive case in arguing that ethnic communities in particular are underinformed and poorly served. Their difficulties in accessing treatment are obviously worsened by problems with language, form-filling and bureaucracy and by simply not understanding the jargon of well intentioned specialists.

I strongly support Scope’s recommendation that a network of BME advocates be developed to improve the quality of communication that is so vital in defining medical conditions, patient needs and the nature of the support and treatment available from local commissioners and service providers. As the noble Baroness, Lady Browning, said, very little is simple when dealing with the range and complexity of disabilities, yet what we may experience as frustration and exasperation can deepen into despair for those most in need, especially if they are also socially isolated. Sadly, many of those questioned during research for this report claimed that they were stigmatised and isolated inside their own BME communities.

Of course, disabled people have been, and still are, stigmatised across our society, despite the progress made in recent years and the extraordinarily positive impact of this summer’s Paralympic Games. The Scope report also rightly stresses that cultural differences must be acknowledged and respected. Certainly, we must be very sensitive to them, but we must also be robust in constantly challenging attitudes that are rooted in prejudice or ignorance, whatever the cultural factors that nurture hostility to disabled people across the UK, whether those people are ethnic or otherwise.

Scope is a national disability organisation providing information and support, particularly to those with cerebral palsy. Cerebral palsy is the most common motor disorder, with two or three cases occurring per 1,000 births. In the UK, that adds up over the years to 100,000 or more sufferers. In perhaps 20% of cerebral palsy cases there is also a related condition generally defined as dystonia. Here I declare an interest as patron of the Dystonia Society.

Dystonia is a neurological condition that causes involuntary and sometimes painful muscle spasms as a result of incorrect signals from the brain. Dystonia can affect many parts of the body. The symptoms include painful twisting of the neck, what we call writers’ cramp, eyes clamping shut, limbs contorting or difficulties simply in speaking or eating. An estimated 70,000 adults and children in the UK have some form of dystonia, of which there are more than 30 different types. The experience of the Dystonia Society may highlight some of the problems that voluntary groups face in relation to those in the BME communities with less common disabilities.

When a disability is little known or rare, the problems of access to treatment faced by black and minority ethnic sufferers are further increased. First, the general lack of awareness of dystonic symptoms is even lower in BME communities. Secondly, since dystonia sufferers often struggle to have their condition properly treated, those from BME backgrounds bereft of support and advocacy risk further marginalisation in the provision of services. However, lack of awareness does not imply lack of importance. Although individual diseases may be rare, collectively they present a major problem for the National Health Service. It is estimated that rare diseases of some kind will affect about 6% of the UK population at some time, perhaps 3.5 million people in total.

On that calculation, perhaps 300,000 or 400,000 people from BME communities will suffer at some point from a rare disease. Unfortunately, many will continue to suffer in silence, undiagnosed and untreated, unless their problems are more actively addressed. Too often we lack the evidence to pin down these problems.

For example, with lesser known conditions, the incidence of dystonia is still uncertain because the epidemiological data are limited. Worldwide there have been some studies that suggest that its prevalence is similar across Chinese, Egyptian and Asian groups studied, but for our BME communities in Britain, such as the Afro-Caribbean community, the data are very limited. It is therefore quite possible that prevalence in some communities is higher than average. For instance, it is known that a gene that causes generalised dystonia—the DYT1 gene—has a disproportionate incidence among Ashkenazi Jews. Despite the good work done by Jewish Genetic Disorders UK to increase awareness of the condition, the Jewish community in the UK is probably not as well informed as that in the United States.

Other problem areas are delays in both timely diagnosis and access to specialist treatment. The average time to diagnosis for dystonia is still longer than three years. For BME communities, we suspect that the delays must be even longer, but again we cannot be sure because no data are available on times to diagnosis. Neurologists who work with groups of dystonia patients also report that participants are very largely white and British born. Similarly, the 3,000-strong membership of the Dystonia Society does not reflect the likely incidence of the condition in BME communities, and ethnic minorities make little contact with our advice line or information website. That is despite the commendable efforts of Dystonia Society staff and the 38 branches to increase awareness and engagement across the country.

The truth is that voluntary organisations like ours, which help those with rare diseases, tend to be too small and underresourced to do effective outreach work with scattered BME sufferers. The Dystonia Society and others like it would therefore welcome the opportunity to contribute their specialist expertise to, for instance, the national race equality strategy advocated by Scope. We are also keen to work within the new structures of the National Health Service, especially at local level, on targeted information campaigns to build awareness of rare disabilities and to develop more comprehensive databases to ensure fairer access to services.

We should support the call on the Department of Health to provide leadership in improving collaboration among local authorities, the new clinical commissioning groups, service providers and ethnic communities on all disability issues. The Scope report, with its extensive research and cogent analysis, includes a series of other recommendations that seem, at least to me, both practical and affordable. I hope that the Minister will agree.