Tag Archives: Epilepsy Society

Concessionary bus passes – no debate necessary?

Once again SCC Conservatives misuse Suffolk’s Cabinet system to stifle democracy.  This time, by forcing through an unpopular and unreasonable decision on concessionary bus fares for the disabled and elderly without allowing questions or debate!

Let’s face it – the easiest way to get people to do what you want is not to allow them any other option. And it does save the bother of answering awkward questions!

For the last 18 months my Lib Dem colleagues and I have been trying to increase the newly imposed restrictions on the bus pass scheme so as to offer free 24/7 transport to disabled pass holders, and travel from 9am for the elderly. Currently all pass holders are restricted to weekday travel from 9.30 to 23.00 . A tragedy for those for whom bus travel is the only option to staying at home; a farce for all of us rural folks whose buses stop in the early evening and run poorly or not at all at weekends (click here for details)

SCC Tories refer to our proposals as ‘enhancements’ and proclaim that the key issue is ‘one of budget priority’ (eg unaffordable – an argument that would be considerably more credible if we didn’t know how much they have stashed away at low interest in  reserves). In fact the issue is one of demand, of need and of legality. Using the word  ‘enhancements’ is rather cheeky. The current scheme was agreed last year and provides significant reductions to a very long term status quo.  The visually handicapped, for example,  had been eligible for free 24/7 passes since WW2!  And for many others, these passes are not luxuries. They are necessities.

SCC’s reductions to the status quo (or rather, the poor and unrigorous process by which they were arrived at) were the subject of a concerned letter from Britain’s Equalities and Human Rights Commission.  This underlined – amongst other things – the extraordinarily poor consultation and Impact Assessments Suffolk’s Cabinet had used to support their  decision-making:

‘Your decision-makers must be made aware in substance of the council’s duty to have due regard to the equality goals in the equality duties.  The ‘due regard’ must be exercised with rigour and with an open mind. It is not a question of ticking boxes.’

As many may know I’m the carer for a relative with a catastrophic health condition, and on the morning of the meeting, was confronted with an unexpected medical emergency. However I emailed four questions to be asked on my behalf. In vain. SCCs Conservative Cabinet decided not to examine its own poor  track-record on decision-making and evidence gathering – and waved their decision on Concessionary Fares through without the courtesy of any debate AT ALL.

J’y suis, j’y reste,” as the General said at Sebastapol.

This action stifled any public airing of their questionable assumptions on finances, their cavalier attitude to equality impact assessments and the shameful farce of their 12 day consultation. Just another example of how undemocratic the Conservatives want the Cabinet process to be.

Yet they could have retired from the field moderately gracefully – and with a perfectly reasonable saving of face. As the Tories’ claims about costs were made on the flimsiest of foundations, a reasonable response would be to agree to provide ‘enhancements’ to Suffolk’s 7,000 disabled pass-holders for 1 year and see how expensive this was in actuality.  Or did they not want to be proved wrong?

It is a disgrace that the disposition of such important issues  should be decided by this small group of unrepresentative individuals, who refuse to listen to reason or their electorate.

So much for Democracy in Suffolk.

Since writing this I have discovered Epilepsy Society have started a campaign for changes to the disabled persons’ pass to allow pass-holders to travel at peak times – with a companion if necessary.  (And if you have intractable epilepsy, a companion may be very necessary. ) Along with visual impairment, epilepsy is a condition where bus travel can be a lifeline – as I know from personal experience!

DLA: potential discrimination against people with epilepsy

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

Suffolk epilepsy care

About 5,500 people in Suffolk have long-term epilepsy, yet it remains very much a Cinderella condition, kept secret, inadequately recognised and poorly funded. People are often anxious to prevent others know they suffer from it because they fear stigmatisation ostracism and discrimination – with good reason. Yet over 70% of people with epilepsy are completely seizure-free through drugs and are leading ‘normal’ lives. The other 30% (including my daughter) live in hope. For the last few weeks she has been lucky enough to be seen at the NSE Sir William Gowers centre – the last port of call for people who difficult-to-control epilepsy – while they try to stabilise her condition.

There are generally about twenty people here being assessed: she has already met several others from Suffolk

EADT coverage can be found here:

Epilepsy in Suffolk: Caroline Page's view  EADT
EADT coverage for Caroline Page's concerns about epilepsy care