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Alanwig
29th September 2011, 15:50
Hi Folks,

It's been a while so I though I'd just update you on my mate Jeff.

Jeff spent a total of 8 weeks in hospital following his PEG, this had nothing to do with the op but rather a breakdown amongst the family which meant he was unable to return home. During this period we have continued to try and get the hospital to carry out a Tracheostomy when Jeff needed it, although intially hopeful, indeed we thought it had been agreed it has now been rejected as not in Jeff's best interests.

We have approached the Chest Clinic at Papworth for their opinion and whilst saying the op was potentially viable have not made a commitment as to recommending the procedure. We are continuing to lobby for the operation and have started looking at surgeons within the private sector, several of whom have rejected the op because of their NHS work.

If anyone knows a private surgeon in the North West or anywhere else in the UK who has carried out a Trache for an MND patient, please let me know.

In terms of Jeff, he finally agreed to go into St. Jospeh's hospice where he has his own room and facilities. He is regaining the weight he lost during his prolonged hospital stay and sleeping much better. He is at 25 on his NIV which has a limit of 30 on the guage, the flow was last adjusted nearly 6 weeks ago.

Jeff is fully quadraplegic having lost the last movement in his fingers just recently. He has stopped using his PEG in favour of solid foods cut up into bite size pieces which he can chew and swallow, he does not have a problem with secretions.

The care at the hospice is outstanding and Jeff has recently had the GRID 2 system installed on his PC and linked to his LCD widescreen TV, with additional environmental controls via a possum. This system was instaled free of charge by North West Assistive Technology based within the grounds of Fazakerley Hospital, where Jeff had the PEG.

He uses a headswitch with ease and thinking ahead we are looking at the PCEye element of Eye Gaze for when he can only control his environment and gadgets via his eyes, this will run via his existing PC.

Jeff can still talk in short sentences when the NIV is taken out and has a good quality of life now he is in the right caring environment and able to control some aspects of his surroundings. Jeff has just celebrated one year since his formal diagnosis.

Jeff sends you all his very best wishes, if you have any question or suggestions please feel free to comment.

Take care and stay strong everyone.

Jeff's mate,

Alan

Jeannie
29th September 2011, 17:51
Hi Alan,

Thank you for the update on Jeff. I am sad to hear his relationship with his family has broken down, if you haven't got family who have you got :( apart from a good friend such as you of course.

I am angry at this trache business grrr I think Jeff needs to be referred to Papworth for an overnight assessment as the consultants there will not be able to commit until an assessment and after care has been arranged and carried out.

What reasons have they given for refusing the trache?

Countyboy
29th September 2011, 18:12
Hi Alan and Jeannie, When are these idiots going to learn that a "TRACHE" can mean up to three years of extra life for PALS. If they need evidence they only need to look at Japan where it is offered to the patient at the time of diagnoses.

Keep up the good work Alan, Jeff needs a good Samaritan like you.

Best Wishes,
CB.

Alanwig
29th September 2011, 20:50
Hi Jeannie,

Other than saying it's not in his best interests, they haven't commited to giving any medical reasons why. Me and Jeff both think it's more about the cost of palliative care, than his medical condition, but how do you prove that?

I've tracked down studies in Italy and the US where Traches' consistently proved life enhancing and provided that info to the consultant, the basic response is we are the UK.

We are awaiting a further response from Papworth, who have been excellent but it's almost coming to a war of words with the hospital here in Liverpool. For every response they give I fire another letter back asking for definitive answers but don't get them.

I don't disagree that Jeff is in an advanced stage of the disease but given the fact Jeff knows he is likley to die shortly after reaching the limits of his NIV, he wants to take the chance on the Trache even if it is life shortening rather than life enhancing and surely that should be his own decision. In his own words "I know I'm on my way to the cemetery, I just want to take the longest route."

Anyway we will continue to fight, but asI said in a post earlier this year I am surprised at the lack of discussion within the various MND forums and any form of lobbying for this procedure by the MNDA.

Alanwig
29th September 2011, 20:54
Hi CB,

Thought I'd typed your name in with Jeannie's in the above post thanks for the response. Have a look above, for my thoughts on what's happening.

I may be way off beam but I actually think they are stalling giving an answer in the hope Jeff passes before they have to give a full answer.

Jeannie
30th September 2011, 08:26
Hi Alan,

Bluepete member of Builduk has sadly passed away, however, he too fought for a trache and won. Here is his website which may be of some help http://www.bluepete.co.uk/ see 'The right to choose'

Here is a post by bluepete which may also shed some light http://www.magimedia.co.uk/buildforum/viewtopic.php?t=352 there are two pages.

It's iron because Jeff would like the right to live yet the family of M who is brain damaged wants the right to die but recently got denied.

Alanwig
30th September 2011, 14:54
Many thanks Jeannie,

Jeff saw the item about the family arguing fo the right to die, given hsi situation he found that ironic as well.

Thanks for the Bluepete link itwas helpful, sad to think someone so energetic within the cause has gone.

Alan

Countyboy
30th September 2011, 17:50
Hi Alan, You are right there is a movement away from giving treatment to those who need it. Here in Wales the patient is expected to go before a tribunal to prove they are worthy of the treatment. As Jeannie can verify we lost a friend on the Build site who was forced to go before a tribunal without any of her medical team, friends, family, or carers. This was done even though she had lost the ability to speak. How can anyone in these circumstances argue their case? She had no chance, she was doomed from the outset even though her medical advised she should have a "trache". I feel it's high time the MND Association stood up for its members and shouted enough is enough from every high point in the land. They should take a lead from the recent court case where a Judge refused an application from a family to stop treatment being given to another family member. Cases of the type we are talking about are, regardless of how they are looked at, in my eyes euthanasia via the back door.
Best wishes,
CB.

Alanwig
30th September 2011, 19:22
Thanks CB.

I do think this is an issue the MNDA need to champion. I sometimes wonder why so many MND sufferers are against the idea of a Trache, it is of course a matter of personal choice, but can't help feeling that clinicians within some parts of the UK paint such a bleak picture that people won't even consider it.

With the advances in technology there is still so much that people can achieve and maintain a real quality of life.

Kind regards,

Alan

Robyn Copley-Hirst
30th September 2011, 20:32
Hi CB and Alan,

Have a look at the MNDA campaigns website. You can have a look at what our current campaigns are, what's going on in your area and how to take action. I'll also make sure myself that this issue, and both of your concerns about it, are passed on to this team on Monday. There's also contact info at the bottom of the site homepage that anyone can use.

http://www.mndcampaigns.org/

Best Regards,

Robyn

Countyboy
30th September 2011, 21:58
Hi Robyn, Please do not take any offence from this post since none is intended. I am aware of several campaigns and am working on "The Pathway For Care" in South Wales. Sadly since this began "The Welsh Assembly Government" have decided on a new revue of the NHS in Wales (Moving the goal posts again). At this moment there are care guides issued for the treatment of "MS" and "MD" in Wales but, nothing for the care of us patients with MND. Recently an Assembly Member for North Wales tried to get the Leader of W.A.G. to provide answers as to why there is no care guidance for patients with MND. That Man was more or less told to go away, that the Assembly had more important issues to deal with. It would seem to me that those of us in Wales suffering with MND are pushed to one side and left to suffer in silence. This has allways been the case with the Labour run Welsh Assembly. Some time ago I was one of two people with MND invited to address the members of the Welsh Assembly alongside some of the finest neurologists in the country. I would not be doing my duty if I failed to point out that no LABOUR AM's attended that meeting. Had it not been for Plaid Cymru, the Conservatives and a couple of LIB Dem's, then there would have been no point in going ahead with the meeting. The Labour Led Assembly has done little or nothing to improve health care in Wales. All Labour have done is cut health services and wasted NHS money. North Wales Assembly member Mr. Isherwood has gathered round him assembly members from all parties in order to fight for those in Wales suffering from MND. It would be in my opinion, a good thing if our Association recognised Mr. Isherwood and his like minded colleagues, and threw all the weight they can muster behind him. Then and only then can I see any improvements being made in the care of MND patients in Wales.
Best Wishes,
CB.

Robyn Copley-Hirst
3rd October 2011, 10:13
Thanks for that, CB. Your ideas and thoughts are always welcome and thank you for the work that you yourself are involved in.

Best Regards,

Robyn

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