Rt Hon David Cameron
Prime Minister
10 Downing Street,
London SW1A 2AA 14 February 2011
Dear Mr Cameron
Re: second reading of the Ten Minute Rule Bill on Epilepsy and Related Conditions (Education and Health Services) (Bill 112)
I’ve already written to you personally, urging you to find time for the second reading of the Ten Minute Rule Bill on Epilepsy and Related Conditions (Education and Health Services) (Bill 112) which is scheduled for 4 March 2011.
In my letter I told you about the double whammy suffered by my teenage daughter and many others like her – balancing the effects of severe and hard-to-control epilepsy on the one hand with poorly integrated non-strategically organised services in health, education, and social care on the other – with everyone playing pass the parcel just as hard as ever they can!
I’m now writing to you in my capacity as county councillor, urging you on behalf of the people of Suffolk to make time for this Bill. As proof that the Bill is needed, I want to highlight a fault in the processes for managing Disability Living Allowance, a fault which provides potential discrimination against people with epilepsy.
Many people with severe epilepsy have no cognitive deficit, but are severely hampered by the effects of medication/seizures. Our teenage daughter is one of these. On turning 16 , DLA starts to be paid directly to the patient, because the DWP (very properly) considers that the recipient should be negotiating their own services unless mentally incapable. This is admirable in theory!
Unfortunately, the intractable nature of the epilepsy and the strength of the medicines used to attempt to control it, often have a bad effect on one’s ability to remember, understand and plan things . This is true of my daughter – it is also true of every other person who is significantly disabled by epilepsy.
Because of the DWP’s assumption of independence, in our case it took over a year for any of us to discover that the DWP had cancelled DLA payments to my daughter and that the expenses that the DLA was supposed to be funding for her (personal care, transport costs etc) were in fact being paid for out of her own pocket-money and savings. We supported her to ring and query this – whereupon she was told she had she had failed to fill in a form which had been sent out to her and that she must now reapply (with the clear implication that none of the intervening year’s DLA would be paid to her, despite clear evidence of her significant disability during this period.)
DLA recipients with epilepsy suffer from a condition that severely affects their ability to concentrate, remember, organize and plan. This is the very reason they are receiving DLA. How can this supposedly disability-aware government agency take no account of the very disability from which recipients are suffering when deciding the methods by which the benefit is managed, renewed and in this case, it seems, terminated?
It is clear that if epilepsy is to be supported by state payments like DLA (and as a carer of someone with intractable epilepsy I can confirm just how many adjustments are needed to support even half-way normal living arrangements) the state’s agencies need to recognise some of the limitations of this condition. The DLA paperwork takes account of a recipient who may be hesitent about reading and writing, or who needs help in filling in the forms, but it does not take account of the degree of mental confusion that can accompany regular epileptic seizures and/or heavy medication
If the state insists on dealing directly with DLA recipients from the age of 16, it is clearly discriminatory to fail to ensure that its methods of communication are dealing fairly with recipients and also taking account of ALL effects of disability. DLA is not pocket money. It is intended to help a disabled person to live as close an approximation to a normal life as possible. Once again people with epilepsy suffer more than others because of the unrecognized nature of their condition
The specific problems caused by epilepsy have been poorly understood by central government in the past, particularly in regard to the provision of educational, medical and social support. Fortunately, the current more enlightened government is finally showing signs of greater understanding. It is social (and economic!) madness to prevent people with epilepsy from contributing to society as fully as they could do. In writing to you I hope that this example of the State’s clearly well-intended yet obviously ineffective interaction with epilepsy will encourage you to make time for the Bill and will strengthen the support that I know you already feel for these measures.
Yours faithfully
Caroline Page
copied to:
Epilepsy Action
NCYPE
National Society for Epilepsy/ Epilepsy Society
Chinese saying of the day:
小事聪明大事糊涂 (xiǎoshì cōngming dàshì hútu )
clever in trifles but muddled when it comes to huge events
