Tag Archives: epilepsy

Epilepsy in Suffolk, Uncategorized, young people

DLA: potential discrimination against people with epilepsy

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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 (xiǎo​shì cōng​ming​ dà​shì​ hú​tu )

clever in trifles but muddled when it comes to huge events

Epilepsy in Suffolk, Schools, Social care, Suffolk County Council, Uncategorized, Your councillor

The EPILEPSY Bill needs you to write NOW!

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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:

  1. 70% of people with epilepsy are wholly controlled by medication
  2. epilepsy is a disability and people who have it should not be discriminated against
  3. 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!

Buses, Epilepsy in Suffolk, Rail, Social care, Transport, Uncategorized

When is a wheelchair not a wheelchair: NXEA

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Today the 10 Minute Rule bill for Epilepsy (Bill 112) passed its first hurdle! Yayyy to all MPs who stayed to vote. Boo to those who didn’t without good reason, particularly those who sat through PMQ but left the chamber immediately afterwards.  Please could they do better next time (4 March, second reading). My MP had a good excuse for absence – and wrote me a helpful letter to boot!

This bill is one of the first moves being made in parliament to raise awareness of epilepsy and recognise how very poorly people with epilepsy and their needs are treated in comparison with others . Valerie Vaz gives details here: http://news.bbc.co.uk/democracylive/hi/house_of_commons/newsid_9220000/9220887.stm.

To mark this I’m sharing the disgraceful story of a Suffolk mother, Avril, whose two-year old daughter’s serious health problems include constant and  intractable epilepsy. Avril deals bravely and resourcefully with really horrible medical crises on a daily basis. Yet she also has to deal with appalling treatment from people who might be expected to help her. Her battles with public transport, and NXEA in particular, are a case in point:

The family can’t go out frequently but when they do, Avril’s daughter has needed to travel on public transport in her buggy, and now she’s older, in a wheelchair that looks like a buggy. And this is where the trouble starts.

“We’ve always had problems with train guards and bus drivers telling us to “just fold it up, it isn’t a proper wheelchair “etc.  In the end we got a medical letter to say she has to stay in her buggy to show to the people who refuse to believe us. We also have a letter from NXEA customer services to show train guards who question us being in first class with a standard class ticket because that’s where the wheelchair space IS.  So that prevents some of the trouble – but then on trains we also need to use ramps.

The last time we travelled on a train was from Manningtree to Ipswich. Manningtree has no lifts and a subway so we asked for assistance to cross the track and were told to take our pushchair down the subway. When we tpointed out the wheelchair was too heavy and not safe enough , he said “that’s not a wheelchair, it’s a pushchair”  Like we would make it up?  I told him we had confirmation it was a wheelchair and we required assistance.

Although he did grudgingly take us over, he insisted on reading the letters, handing them back without comment as our train pulled in and wandering off without releasing the ramp for us.

So here we are. The train ‘s about to leave and there’s a choice of either lifting her on or sitting and waiting for another half hour and hoping the same chap would get the ramp out next time… Would you have fancied your chances? We didn’t.  And anyway, as well as a sick 2 year old there’s her tired 4 year old sister to consider. So we manhandled my daughter and wheelchair onto the train ourselves – you know how high those intercity trains are – without the aid of  the ramp.  Her wheelchair weighs over 16kgs, my daughter weighs 12kgs, and then theres the oxygen and everything else that we have to carry for her.

I’m not one of these women who won’t get their hands dirty or who expect the men to do the lifting, but I was still feeling the pain in my c-section area the following day.

Our rare family day out was spoiled, but my  main anger and biggest concern was my daughter’s safety – and the fact we were being given trouble when we needed help.”

Avril complained at Ipswich – her local NXEA station – but although NXEA run services from Hertford to Harwich and Stratford to Sheringham, you have to complain locally. Avril was told that the letter had been passed onto the manager at Colchester, as Manningtree falls within the Colchester Manager’s responsibility. She called yesterday – 24th November – to find out progress to be told that her letter (of 17th October) had disappeared in transit! In short, the typical runaround!

NXEA installed barriers to prevent passengers evading their fares – but where are their internal barriers to prevent managers evading responsibilities!

On another tack, National Express East Anglia currently covers Suffolk Essex, Norfolk and Cambridgeshire.  Avril cannot be the only mother in East Anglia who has this problem. Surely it might not be beyond the wit of man for this vast company – which has  a monopoly of East Anglian rail  transport – to have sufficiently responsive internal systems to come up with a solution that will allow Avril and her daughter, and others like them, to travel without this difficulty.

At the moment they have to rely on whether individuals are ‘nice’ or ‘nasty’. What kind of service is that?

“It’s tough looking after my daughterand dealing with all the dramas and appointments that she comes with. Sometimes its nice to just be able to go out and try to forget that things aren’t ‘normal’. And then you meet an idiot like we did and it’s rammed down your throat again…..

My daughter will be using this particular wheelchair until she outgrows it at 4.  Not sure I can cope with another 2 years of the stress that comes with public transport. “

Post scriptum

Following another letter directly to the Managing Director of NXEA, an article in the local paper at Manningstree, and this blog, Avril did get a full apology from NXEA and a commitment to improve staff training on this issue.