late last year,the first reading of a Ten Minute Rule Bill for epilepsy took place in the House of Commons. We now need your support to make this law!
The bill is called the Ten Minute Rule Bill on Epilepsy and Related Conditions (Education and Health Services) – Bill 112, for short. It will mean that health and education departments will have to improve services for people with epilepsy and related conditions. This would lead to benefits for the manypeople with epilepsy whose lives are adversely affected by poor health or education provision.This in turn would benefit everyone.
Nearly half a million people the UK have epilepsy with three people dying from epilepsy-related causes each day: more than the total of Aids-related deaths and cot deaths combined.
There is an “alarming” rate of failure in diagnosing the condition and better specialist care and treatment is needed, says MP Valerie Vaz who proposed the bill.
A Ten Minute Rule Bill is a potential new bill for consideration, proposed by an MP who is not a member of government. Although not many Ten Minute Rule Bills make it into law, it can happen if the government agrees with the cause or is happy to absorb it into other bills it is passing.
Having passed the first reading, a second reading of the bill has been scheduled for 4 March 2011. The second reading is when these kinds of Bills normally fail. And so both Epilepsy Action – and I – are asking your help to make sure this bill is given the time to be heard in Parliament.
Please write to the Prime Minister, David Cameron at 10 Downing Street, London SW1A 2AA.
Remind him that a second reading of the Ten Minute Rule Bill on Epilepsy and Related Conditions (Education and Health Services) (Bill 112) has been scheduled for 4 March 2011;
Ask him to find time for this important bill;
Tell him of any experiences you may have of epilepsy, either as someone who has it, someone who cares for someone who has it, and/or in the wider context of life in Suffolk . How does epilepsy affect you? How good or bad have you found the services for epilepsy ? What is your experience of the education system and epilepsy? What problems are faced by people who have epilepsy in your school? on public transport? in your workplace?
Although nearly half a million people in this country have epilepsy, it remains a Cinderella condition – kept hidden, inadequately recognised and poorly funded. People are often anxious to keep this condition secret because they fear stigmatisation, ostracism and discrimination. Yet 70% of people with epilepsy are seizure free and leading ‘normal ‘ lives.
Statistically, there should be at least 4 MPs currently in the House of Commons who have it -and 30 more who will have/have had a seizure at some point in their lives. Yet it was only in this parliament that Paul Maynard became the first MP to be open about having epilepsy!
Suffolk has no specialist epilepsy care within the county – meaning that patients need to travel outside to specialist units. As a result simple changes and ‘tweaks’ to medication (ones that could make the difference between a person functioning and non-functioning in society) may need a six or seven month wait for an appointment to discuss. If the tweak or change is unsuccessful there will then be another wait to report back, another wait before a new medication is assessed etc. Gaining control of the condition may therefore take years without good cause, years in which the patient and those around them become prey to lower and lower expectations.
As a result local hospital doctors may then have an unduly limited expectation of outcome (suggesting social care solutions rather than addressing the health problems of patients with epilepsy).
And epilepsy impacts on more than just health. 50% of students with epilepsy fail to reach the academic level predicted by their IQ, with effects that can be life-long. This is because a good educational outcome for students with epilepsy is not just about medical care and risk assessment, but also ensuring that schools and teachers manage the impact that the condition/ medication has on learning.
While some good employers accommodate an employee’s epilepsy – and let’s remember three things here:
- 70% of people with epilepsy are wholly controlled by medication
- epilepsy is a disability and people who have it should not be discriminated against
- a diagnosis of epilepsy per se has no impact on intellectual attainment or ainnate capacity
it is surprising how frequently epilepsy is linked with joblessness
Indeed, when my own daughter was due to do work experience in Y11, no workplace could be persuaded to offer her a placement – with the noble and notable exception of the Hospital Education Service at Ipswich Hospital .
Yet how can anyone learn to support themselves unless they are ‘allowed’ to work?
It costs the health service, central government and local authorities an extraordinary amount of money to support young people with epilepsy to an often low level of attainment. Yet unless they are supported to improve on this they will cost the health service, central government and local authority a great deal more over subsequent years. This is a waste on many different levels and is no benefit to anybody in the equation. Yet what is needed is not more financing, but greater awareness and more appropriately targeted support as laid out in this bill.
Please support this bill by contacting David Cameron NOW!