SCDC leadership- Vote NOW: will it be a Boris or a Jeremy?

Just to remind you all that  if you want to have your say on Suffolk Coastal District Council’s future leadership, you need to act fast. SCDC  is choosing whether the district council is run in future by a Leader, appointed from amongst the district councillors, or by a  Mayor, elected by US and wants to hear from you by 3 December 2010 – eg next Friday.

At present the Council operates a ‘Leader and Cabinet’ system where 9 district councillors take collective responsibility for the Council’s main decision-making. A leader is appointed annually from within the councillors , whose political composition is currently: Tory 45, LibDem 9, and Labour 1.

The plus side of this system is representation of councillors’ views (though with a significant tilt to the majority party). Whether there is a minus side depends on how representative of or responsive to your views you think your leader and cabinet are. There is also the possibility of Buggins Turn.

The alternative would be a mayor elected by us, the electorate.

The Mayor – not being appointed from within – might turn out to  be very independent of the views of the councillors. This may be for good or for bad.

More details can be found on http://www.suffolkcoastal.gov.uk/yourcouncil/democracy/consultation/

SCDC want to know whether you prefer:

  • Option 1 – A Leader and Cabinet.
  • Option 2 – A directly-elected Mayor and Cabinet.
  • No preference.
  • Don’t know

You can complete an online questionnaire

Or write to:

Head of Legal and Democratic Services
Suffolk Coastal District Council,
Melton Hill,
Woodbridge,
Suffolk IP12 1AU.

The council tells us you can have your say on the proposed changes until 3 December 2010.

When is a wheelchair not a wheelchair: NXEA

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.

Improving epilepsy care in Suffolk!

Tomorrow, Wednesday 24th, there will be a 10 Minute Bill about Epilepsy care and education, straight after Prime Minister’s Questions

There is still time to write to your MP and urge them to attend and support this bill. It would only take ten minutes of their time. You can find and contact your mp here: http://www.writetothem.com/

I wrote to my own MP, Therese Coffey, as follows:

Dear Therese,

his is  Caroline Page,  Woodbridge County Councillor here. I’m contacting you as my MP about an issue in which I have I have both a personal and a campaigning interest  – the care and  education of people with Epilepsy.
You may be  aware that there is going to be a reading of the Ten Minute Rule Bill on Epilepsy and Related Conditions (Education and Health Services) Bill straight after Prime Minister’s Questions on Wednesday 24th November.
I don’t know if  you are attending PMQ this week? If so, I would be grateful if you would stay stay in the chamber for an extra 10 minutes afterwards  to support the bill.
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 only one MP has mentioned that they have 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 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.
Indeed I have known for years a 17-year-old who has severe epilepsy, a high IQ, a good work ethic, and a supportive family  yet has managed has only one GCSE despite going to one of the best state schools in Suffolk.
It has cost the health service, central government and SCC an extraordinary amount of money to support her to this low level of attainment. And unless she can improve on this she will cost the health service, central government and SCC a great deal more over subsequent years. This is a waste on many different levels and is no benefit to anybody in the equation.
(I must point out here, that this situation is shared by many other students with other chronic conditions reliant on powerful medication – all of whom can also be added to  this failure.)
Yet this failure is by no means inevitable. Recently the National Centre for Young People with Epilepsy  have discovered it’s neither expensive nor unduly challenging to turn this situation around via a training programme for schools. The charity is currently rolling out an intervention programme to improve the dire educational outcome of young people with epilepsy (Here’s a link to their successful education pilot study in Surrey: http://www.ncype.org.uk/dmdocuments/EpilepsyChampionsPilotReport.pdf )
The impact – and cost to us all – of poorly addressed epilepsy has been raised in parliament recently by MP Paul Maynard.  I gather also that neighbouring MP and doctor Dan Poulter has recently put in writing his concerns about (specifically) Suffolk provision .
Can I urge you to add your voice to his at parliamentary level – whilst I campaign  more locally –  to ensure a significant slice of our population is able to achieve their potential contribution to our society (and, indeed to this economy)
Best wishes