Disability Services

Baroness Benjamin Excerpts

Thursday 10th January 2013 Lords Chamber

[Baroness Benjamin]

My Lords, I, too, congratulate the noble Lord, Lord Boateng, on securing this important debate and on his excellent speech highlighting disability issues, which are causing major concerns to the black and ethnic minority communities across the country. These concerns of inequality and the lack of understanding of needs are clearly outlined in the Scope report, as we have heard throughout the debate.

I should like to concentrate on one particular area covering those who suffer from sickle cell disorder. I declare an interest as a patron of the Sickle Cell Society. My contribution is based on evidence-based statements from experts, which are the experiences, opinions and views of the Sickle Cell Society’s stakeholders—that is, the professionals, service users and user groups from within the networks of the Sickle Cell Society and the UK Thalassaemia Society.

I was dismayed by the relevant evidence sent to me which expressed the frustration faced within the BME community by those suffering from sickle cell and the challenges posed by the appalling response in addressing the needs of BME people living with disability.

Sickle cell disorder is not a visible disability but its nature affects patients almost from birth and then has a marked social impact, including an inability to work, early death, stigma attached to disability, the need for repeated, unexpected admissions and a severe reaction to opiates, which are often given in error by medical staff, who in many cases are unfamiliar with the condition.

There are a number of key issues that I should like to cover which I believe will show just how necessary it is for action to be taken and for urgent consideration to be given to sufferers with this disability. BME people living with sickle cell suffer from the specialised nature of the disability that is unique to sickle cell sufferers. As I have said, the disability is invisible and varies between and within individuals. Feedback from the sector clearly identifies that those conducting the statutory assessment of disability need to be aware of these issues. A report by those dealing closely with sickle cell sufferers concludes that those with the condition almost always fail the initial statutory assessment that channels candidates through the Government’s Fair Access to Care Services, which is required for most disability welfare support entitlements.

Research has also shown that an inhumanity impact is experienced by sufferers. The loss of welfare entitlements is increasingly reducing people with disability as a result of sickle cell disorder to exist in inhumane living conditions. This social justice failure is a serious indictment of our society. Evidence also shows that such is the stigma of disability that some people would rather not undergo the ordeal of the label, despite the benefits to which it may entitle them, assuming that they are able to successfully brave the challenging FACS assessment.

There is also an NHS cost impact because, as a result of wrongful assessment under the FACS test, sufferers are forced to depend on acute hospital services, with huge cost implications for the NHS budget.

Prescription charges are another big issue that have a profound effect on sickle cell patients. A regular supply of medication is crucial. Evidence shows the beneficial effect of hydroxycarbamide medication in reducing the number and length of hospital admissions in this patient group. This clearly represents NHS cost savings as well as increased patient life expectancy. However, because of high prescription costs, many patients decline medication or frequently run out of supplies, making treatment ineffective and resulting in costly A&E attendances and hospital admissions. This is because the severe nature of the disease and complications may result in prolonged admissions, exchange blood transfusion and costly intensive care.

I ask my noble friend the Minister whether the Government will consider the idea of all sickle cell patients being exempt from prescription charges. The number will be small as, of the 12,500 sufferers, 60% are children and some of the adults are on welfare benefit, so it will mainly include those in work, who are often low paid or part-time owing to the nature of the disorder and its impact on their ability to study and work full-time.

There is some anxiety among those involved with sickle cell services that the complexity of the services needed effectively places them largely outside the scope of the clinical commissioning groups. Many are concerned about the type of policies that will be in place to ensure that a patient-centred, integrated approach to care engages primary care and community interests across health, social and community care. This is to help to reduce morbidity, needless hospital care and the health inequalities experienced by this seriously marginalised sector.

There are expectations that not only CCGs but local health and well-being boards should aim to reflect the make-up of their respective client communities. So, given that the steady establishment of CCGs and the view that community provision of sickle cell disorder management have a major role to play across the country, especially in high-risk areas within CCGs, can the Minister tell the House what priority is being given by CCGs to people in the sickle cell and thalassaemia community, who are feeling concerned, vulnerable and anxious about the situation and their future?

As yet, there is no cure for sickle cell and more research is needed both for a cure and for the treatment of current sufferers. The existing treatment involves a form of chemotherapy, which can have harmful side effects, such as damage to the immune system. Fortunately, Sparks, a charity which provides funding into research for childhood diseases—I declare an interest as a trustee—is funding a research project that aims to investigate the possibility of a safer, less toxic and more targeted therapy. However, in the mean time, there needs to be widespread education and awareness among those who assess the level of disability of sickle cell sufferers. They need to be made more aware and educated about the situation faced by people living with sickle cell and its associated conditions.

The Government also need to seriously improve the awareness of the wider population about the plight of people living with this inherited blood disorder and the disabilities that they may be facing, quite often invisibly so.

I know that the Sickle Cell Society, the UK Thalassaemia Society and the UK Forum on Haemoglobin Disorders would be more than willing to meet the appropriate government departments and agencies to discuss how they can work together to address the serious concerns that I have highlighted. I hope that this offer will be acted upon.

As the last US election showed, BME communities vote for people who they consider address their needs and concerns. This should be food for thought for us on this side of the Atlantic. I look forward to hearing my noble friend’s response, as I know that she is always sympathetic to inequality issues and, like me, strives towards a just and fair society.