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 – 24^th November – to find out progress to be told that her letter (of 17^th 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.