Monday, 6 August 2012

Let's Turn The League Tables Around, Shall We?

I'm determined to make some tangible progress today.

The Facebook page has gone over 530 "likes" I've made MANY wonderful new friends and passed tonnes of information back and forth but I'm itchy for more progress now. Those of you friends with me on Facebook will see from my status this morning that I had received 2 phone calls before 09:30 this morning - perhaps that's given me the boot up the bum.

It's really difficult to work out who's who and who does what with this whole Welsh Assembly thing.

Politics wise, this is how we're looking:

Gwyn Price – P.A/C.W – Joanne Thomas -
1st Contact - July 26th Email received following forwarded email from Jeff Cuthbert. 3 emails in one day!!!
2nd Contact  -  Email received 6/8/12 Mr. P. has written to the C.E. of the A.B.H.B – letter copy to follow via snail mail

Jeff Cuthbert –
1st Contact - 20th July Email received to the effect of “as you live in Blackwood Gwyn Price is your man” Fwd email (he did)

Leanne Wood – – Aled Morris –
1st - Initial email sent  18th July – replied on July 25th “will make sure seen asap and write to Lindsay Whittle” AM for Health

Lord Touhig –
1st – emailed him on 18th July

David Wayne M.P. -
1st email sent 6/8/12

Chris Evans M.P. -
1st email sent 6/8/12

Paul Flynn M.P. -
1st email sent 6/8/12 - 06/08/12 Replied  with short shrift 1 ½ hrs later!

Glenda Jackson M.P. -
1st email sent 6/8/12

Helen Goodman M.P. -
1st email sent 6/8/12

Philiip Hammond M.P. -
1st email sent 6/8/12

Gerald Howarth M.P. -
1st email sent 6/8/12

Dr. Liam Fox M.P. -,
1st email sent 6/8/12

Andrew Lansley M.P. -
1st email sent 6/8/12

Anne Milton M.P. -
1st email sent 6/8/12

Carwyn Jones M.P. -
1st email sent 6/8/12

Lindsay Whittle -
1st email sent 6/8/12

The email I sent them today is as follows:

Dear Rt. Hon. Members of Parliament,

My family and I are hoping that you might be able to help us as we are desperate. I am writing to you specifically as you are the M.P.'s most closely associated with our family. We live in Blackwood, Caerphilly but my Husband, the subject of this appeal, is from Barnard Castle, and he is to be treated at the London Royal Free Hospital.

I started a campaign last month to get my husband the treatment he desperately needs. I have been able to make some progress but now I feel I have come to the stage where I need political assistance.

My husband, Stephen Brunell, served with the RAF for nearly 22 years. He was medically discharged shortly before his 22nd year, following 2 operations to rectify a break to one of his neck vertebrae sustained while on active service in Afghanistan, early 2006. When he retired we were told that the Military Charter gave him priority NHS treatment. We've seen no evidence of this.

Steve never really recovered from the 2nd operation and is now a complete mystery to his consultants, headed up by the most excellent Dr. Fady Joseph's team from the U.H.W. A year ago it was explained to us that the team had drawn multiple blanks and had no where else to turn.

At the time, Steve was relatively stable, it was infuriating that we could only get access to see our consultant every 4/5 months at best, but then he started to deteriorate. Quickly, and badly.

I lied to get an appointment before the time we were supposed to have one, tricking the booking centre. It worked, but the appointment was for 10 weeks later. I knew Steve couldn't wait that long. He was admitted via ambulance to Ystrad Mynach Hospital on 27th June 2012 and that is where he still is.

Steve has now lost all but a tiny bit of control over any of his bodily functions. He can manage to feed himself if the table is 3 inches from his face, but other than that, he has very little. He is hoisted at a ratio of 2:1, can spend a maximum of 2 hours sat in a chair before he is in such agony that he'll sleep the rest of the day and cannot be moved between hospitals for appointments as the ambulance service deem it too dangerous due to his extreme pain and violent muscle spasms. 

He has permanent vertigo, double vision, 30% hearing only, use of a tiny bit of his right arm only, he's stiff and his arms can't be stretched making dressing him very difficult (2:1 again). He's now losing his cognitive abilities, he slurrs permanently, has no short term memory whatsoever. 

I have battled to override the system whereby we had to attempt a 2nd opinion locally. The Dr. requested this of was good enough to look through all the case file/notes and establish that he was satisfied with Dr. Joseph's opinion, but we have not yet received an appointment to see him at his clinic (not that we'd be able to go). Dr. Joseph and I made a joint decision not to hang around locally any further and Steve's case is in the process of being referred to Dr. Desmond Kidd at the Royal Free Hospital, Pond St, London NW3 2QG.

This is why I am writing, specifically. I need this referral to be actioned urgently. Steve is deteriorating every day. He's currently got no diagnosis or treatment plan - his illness is a mystery and it is taking his life away. He used to be a big man full of energy and action and postivity - the life and soul of any party, but he's turned into an old, old man, unable to participate in anything. 

There have been many, many articles written about Steve's case in both local and national newspapers. I started a Facebook campaign less than 2 weeks ago and we have over 540 "likes" (search for Fighting For Steve) - I also write a blog about the processwww.fightingforsteve.blogspot.

I'm hoping that you may be able to assist me to put pressure on the London Health Board to push Steve's referral through immediately. I'm afraid now that he won't recover at all. He is losing the will to live.

Of course then is the issue of how to get him there? Well, I have qualified Nurse and Paramedic volunteers lined up already, but he's going to need to be flown, with sedation.

I look forward to hearing from you at your earliest convenience, but please be aware that my husband does not have the luxury of convenience.

This is an email I today sent to a number of people, but for and addressed to Steve's consultant. His Secretary was one of the phone calls at 09:02, impressive indeed!

Thanks so much for your phone call this morning and I really appreciate the help and assistance you are giving me - you're also keeping me in the loop. Thank you.

Anyway, as discussed, email for Dr. Joseph as follows:

Dear Dr. Joseph,

Some information for you relating to the conversation we had last week.

Re: The link between Steve's mental and physical health. I have spoken to both Combat Stress and the Welsh charity Healing the Wounds that do the same thing as C.S. They both say that with Steve's cognition and ability to take in and remember information and his speech difficulties and variations, it will be impossible for either of them to help Steve at this stage. Give that Steve's been on the waiting list for a residential Combat Stress course for 4 years now (and they have all but closed their doors being over saturation point) I'd not be holding out much hope there, but Healing the Wounds seem currently more capable - it's a shame he's too severely impaired for them. In my humble opinion, there is a substantial link between the link between his physical and mental health.

I did however discover  (well, it was pointed out to me) that as part of the Military Charter ( ) the M.O.D. have put this in place: 

About Defence

The Medical Assessment Programme

The Medical Assessment Programme (MAP) provides mental health examinations for all veterans with operational service since 1982 (including veterans of the Falklands Conflict).

The MAP is located at St Thomas' Hospital, London. The facility is headed by a Consultant Psychiatrist with access to a wide range of military experience and knowledge of military health matters within the Ministry of Defence. Veterans with operational service since 1982 who feel they would benefit from seeing the MAP Consultant should seek a referral via their General Practitioner.

What is the purpose of the MAP?

The MAP investigates patients' mental health concerns and, so far as possible, it provides a diagnosis if the veteran has a mental health disorder, and recommends appropriate management if required. Advice will also be provided on the extensive support network that is available to veterans and their families in the UK.

How to refer patients to the MAP 

Doctors are encouraged to refer any patients who are concerned that their mental health may have suffered as a result of their military service and who fulfil the criteria for being seen. General Practitioners wishing to refer a patient should contact the MAP at the following address:

Head of Medical Assessment Programme 
The Baird Health Centre 
Gassiot House 
St Thomas' Hospital 
Lambeth Palace Road

Email (see details under Contacts on the right hand side of the page)

Further Information

General Practitioners or veterans requiring further information about the service provided can contact the MAP on Freephone:            0800 169 5401 begin_of_the_skype_highlighting            0800 169 5401      end_of_the_skype_highlighting       or refer to the Related pages link to Frequently Asked Questions. There is also more information under External Linkson the right hand side of the page that will direct you to the veterans-uk web site.

It might be of some help but, of course and as usual, he would need to be referred. If there's anything I can do to aid this process I'd be very happy to and it is a source of endless frustration for me that I can't do it myself, and whether or not it's worth the paper it's written on is a whole different thing.

Also, a few syndromes/diseases have been suggested to me through the campaign, the articles etc. I'm sure you've already ruled them out but as we've not had a conversation directly about them, I have to suggest them. One is Devic's Syndrome, the other Guillan Barre Syndrome. Have you any thoughts on these? G.B. was suggested by some friends in the healthcare profession.

Just to keep you in the loop as, indeed, you do for me, I will be putting pressure on the L.H.B. to action this referral as soon as possible by any means necessary. I intend to use political powers (that's presuming I can get any of them to reply to me) and I intend to make it very clear to them that the treatment both Steve and I have been afforded by your team has been exemplary, it it "the system" I have a problem with. 

1 comment:

  1. And if anyone can make me a neater politician league table - I'd be MEGA grateful!!!