A letter to my MP

Today I am a deeply unhappy person - this letter of complaint to my MP will explain why. I am supposed to be resting having had a surgical procedure carried out on me this morning - instead I find myself fighting for my treatment to continue on a regular basis.

This is what I wrote to my MP, James Arbuthnot :

Dear Mr Arbuthnot,

Re: NHS Cuts that effect me personally.

I am a constituent of yours, and actually voted for you in the last election too.

David Cameron promised there would be no cuts to the NHS in May 2010 in an interview with Andrew Marr on the BBC.
Today, I arrived at Frimley Park Hospital for my routine 12 weekly day surgery that I have to enable me to cope with severe chronic pain. It entails having several injections and epidurals, but having them makes a considerable difference to my quality of life. They don't make me pain free, but they do make the pain bearable, and allow me to carry on a relatively normal life within the bounds of my problems.
I was wheeled down to the Theatre as had happened on any other occasion, and went through all the usual procedures of being clerked in, and double checking everything before I was put to sleep. In the theatre, the Consultant, who I have been seeing every 12 weeks for several years, came to talk to me. Usually this chat is to relax you, and a few pleasantries are exchanged. I hold my Consultant in very high regard, and I could see how hard it was for her to say what she was about to tell me.
She informed me that the PCT for Frimley Park Hospital were no longer willing to permit patients in my circumstances to come in on a 12 weekly basis. In future I would ONLY be offered an appointment for treatment every 6 months. This shocked me, and I asked what was I supposed to do about pain relief the rest of the time (about 30 weeks in every 52) where I was no longer going to be benefiting from the drugs they inject into my spine to ameliorate the problem. The reply was - she didnt know, her hands were tied, and despite my clinical need for treatment every 12 weeks, I was going to be denied it because of budget cuts. I understood from the conversation, that she had to tell many people the same thing this morning. There was NO clinical basis for treatment being withheld, she was following PCT Manager's instructions.
Quite apart from the despicable way this was done - I was moments away from being anathetised in Theatre, and thus the timing was wholly inappropriate, I felt cheated and lied to by your party and David Cameron in particular. Shame on you.
You tell me how I am supposed to manage my life now I am being denied the treatment that helps make getting through each day tolerable, and allows me to be an effective member of society.
I am a recent cancer patient, and also diabetic, and as a result of cancer treatment live with Lymphodema, and Cellulitis too. I have already spent the past 3 years funding my own Lymphoedema treatment because the PCT at Basingstoke General has no staff capable of fulfilling this palliative care role for cancer patients. I am certainly not in a position to start being able to afford paying for the care I believe I am due by right on the NHS and am now being denied. I have paid my national insurance contributions all my adult life, and still do.
Would it be simpler perhaps if David Cameron organised a prescription for me that lead to a fatal overdose, and then I wouldnt cost the NHS anything ever again. You have no concept of how difficult my life is, and now I am denied the one thing that makes life tolerable. Life wont be worth living if I have to spend most my time in agony, or so dosed up on oral painkillers, it prevents me leading any kind of normal life.
Shame on you all.
I'd like to know what you are going to do to help me and those like me who depend on their treatment for a reasonable quality of live.
Yours sincerely,
Zoe Lynch
Categories: Uncategorised Just Life

Comments

Barbara Green
Barbara Green 12 October 2011 at 13:23
what can I say except this is disgraceful Zoe and I am so sorry that once again you seem to be impeded rather than helped. I think it's very important we shout out about injustice in all it's forms. Thank you for doing your bit not just for you but for others in your position. Btw did you sign the petition to the Lords that 38degrees organised https://secure.38degrees.org.uk/message-to-lords
Zoe Lynch
Zoe Lynch 13 October 2011 at 11:46
Hi Barbara, yes I did - even sent a link of this to them. Sadly, we all know that it failed and the Lords let it through :(

Thanks for the support and encouragement though, means a lot

xx
Zoe Lynch
Zoe Lynch 12 October 2011 at 13:38
Hi Babs,

Yes - signed the petition and sent several emails to my MP, the Heath Minister and Cameron in the past in support of maintaining the NHS. Been given all sorts of assurances, but they are tantamount to lies. They tell you what they think you want to hear. It has very little relationship to the truth most the time.
Jackie
Jackie 12 October 2011 at 13:57
Oh, Zoe, that's shocking! I do hope your letter has a positive outcome, it's just so unfair that you've had to fight for treatment every step of the way.

Jackie xxx
Zoe Lynch
Zoe Lynch 13 October 2011 at 11:48
I suspect it will get worse and worse and even the most vunerable will be hit hard. Did you see what Jackie Barnes said about gaining access to new drugs that keep her alive longer. Puts my problems in perspective.

xx
Felicity
Felicity 12 October 2011 at 14:04
Lost for words Zoë. Absolutely stumped.

I truly hope that your letter brings a positive result.

I must add that I feel for you consultant - what a terrible position to be put in considering her raison d'etre must be to improve the quality of life of her patients.
Zoe Lynch
Zoe Lynch 12 October 2011 at 14:29
Couldnt agree more, Felicity. I couldnt ask for a more supportive and responsive Dr. We both ended up in tears, she knows what it means to be to be able to have some normality in my life.
lisa
lisa 12 October 2011 at 14:05
So sorry to read this post. Politicians=lies, lies and more lies. Last year I funded my hysterectomy, following postponement (x2) and then indefinite cancellation. Like you I wrote to my MP and the Secretary of State for health- a swift buck passer if ever there was one.
I really hope your eloquent letter has the desired result. Local press/national press/radio??
Zoe Lynch
Zoe Lynch 13 October 2011 at 11:51
Hi Lisa

I fear I am getting very cynical about it all too. Thanks for the support and encouragement, its much appreciated.

Yes, tentative enquiries with a local TV station underway, and I have send the story to all the nationals. No responses as yet. Judicial root that another commenter suggested looks like a way forward, just expensive.

xx
Uta Gaßner
Uta Gaßner 12 October 2011 at 14:23
Oh my Gawd and I thought that it was scandalous that my daughter had to wait 3 months for physiotherapy funded by the NHS (OH and I decided to let her have it privately now) but this is just plain awful. Who makes these rules and with what authority? If your doctor decides you need the treatment she surely ought to have the last word in this not someone who doesn't know you and your special case, and who isn't even a doctor.
Big hug. I am praying for a miracle to happen xxxx
Zoe Lynch
Zoe Lynch 13 October 2011 at 11:52
Hey Uta,

good to hear from you. Sorry to hear about your daughter - thats plain wrong too.

Thank you for the support and encouragement, means more than you know.

xx
Michele Brenton
Michele Brenton 12 October 2011 at 14:48
I would recommend writing to your health board, GP and consultant telling them you are going to seek a Judicial Review of their decision.

http://www.publiclawproject.org.uk/downloads/GuideToJRProc.pdf

I would be amazed if there isn't some way to assert your Human Rights in this decision. Although Judicial Review isn't necessarily a way to force them to change their minds - if you can get legal aid or some other way of carrying this through without it being too costly for you financially (maybe a friendly legal bod who is sympathetic to your cause) - it is a very onerous process for the Health Board to deal with and it is possible they might decide it is cheaper to alter their decision on this specific matter than to have to be pulled through the JR process. There is more than one way to skin a cat.

Just another avenue you might like to explore. Worth a try maybe?
Zoe Lynch
Zoe Lynch 13 October 2011 at 12:00
Hello Michele,

Nice to make your acquaintance. Really appreciate the time and trouble you have taken to show me a a viable alternative route. I spent a considerable time yesterday after you suggested this reading up on how this could be brought forward.

I doubt I would be entitled to legal aid, and thus the quandry is do I use what little money I have to pursue this, or do I hang on to it to pay for private treatment should other avenues fail to earn me redress and reinstatement of original treatment plan. My principles tell me to go for it whatever the cost, but in doing that I wont be able to afford to pay for my own treatment, and then it would fall to my family to care for me when the pain is too great for me to be an effective member of my family. It is a very difficult choice and I hate this Government for putting me in such a position
Marcia Hughes
Marcia Hughes 12 October 2011 at 17:35
On no, the bastards!!! I am so sorry for your situation Zoe, it truly stinks that these cuts are discriminating against people who have real need. If there is anything I can do to help your cause please let me know. Maybe we could start a petition and get this ridiculous decision overturned. Let me know. xxxxxx
Zoe Lynch
Zoe Lynch 13 October 2011 at 11:52
Love you Marcia, what would I do without people like you xx
Gillian Cox-Woolven
Gillian Cox-Woolven 12 October 2011 at 20:26
I think the legal root is a good option, so too is a petition, the News Papers may pick up your story as will your local TV station. What upsets me is the terrible cost to yourself while in a decline into unbeatable pain. I am prepared to right a letter to your MP to appeal to his better intellect and compassion; that is if he has enough compassion to stand up in the House of Commons and appeal for a clearer policy for the people who suffer 'invisibly' with pain.
My own story is that my husband has suffered with ME and Fibromyalgia and because he was once a sportsman an arthritic spine. He has now developed IBS. He has never had disabled recognition and he spends days in bed because the pain is so exhausting. I understand your problem and will do anything to help. Please stay in touch. Gillie
Zoe Lynch
Zoe Lynch 13 October 2011 at 11:55
Agree, my instinct is to kick up a big a fuss as possible, and improve it for myself and people like me.

My quandry is this - do I spend what money I have on a legal battle, or do I use it to pay for the treatment privately so that my life remains tolerable? My principles tell me to fight it every step of the way. It is a difficult choice.
VP
VP 13 October 2011 at 18:01
I seem to be constantly angry these days that people like yourself have to fight just to make life almost tolerable.

What's even more worrying is there must be loads of people who can't fight or don't have family or friends to do it for them.

Hang in there.
x
Zoe Lynch
Zoe Lynch 13 October 2011 at 18:05
Hi Michelle,

Anger is good if you channel it for something constructive. I am hoping that by challenging this, it will not only make it better for me, but the 12 other gents/ladies on the day unit with me yesterday who are now in the same situation and the countless dozens of others who have already been told on the Wednesday lists for this procedure, past and future.

Time will tell, and thank you for the encouragement x
Lisa
Lisa 13 October 2011 at 22:52
I keep thinking of you and your awful dilemma. When I complained re my treatment- should really be non-treatment, I wrote to my MP+ Sec of State + PALS (complaints dept at hospital concerned). Have to say that apart from a temporary letting of steam I only learnt that were buck passing to be an Olympic sport we'd be on the podium with the union Jack flying.
Maybe, just maybe the threat of a judicial review will produce the desired result- thus a good result with no financial outlay. Or a modest outlay via sols letter to show a serious intent.
Keep fighting and let us know how you get on.
xxx
Anna
Anna 13 October 2011 at 23:34
Dear Zoe, it really makes my blood boil reading what has happened to you. Apart from the substance of what you were told the timing of breaking such news to you is unbelievable. Do shout as loud as you can and hopefully somebody somewhere will hear. Take care and keep strong xxx
milla
milla 15 October 2011 at 13:47
God, no wonder you're pissed off. This is dreadful. I'd be wary of the private route in case it jeopardises your options on the NHS. Their weasly rules could mean that if you opt out of their system, no matter that you were driven out, you may not be able to get back on their roundabout. This prompted by friend with son with Duchenne Muscular Dystrophy - goes to a private school as state can't support him but now that she has pancreatic cancer and can't drive him to school the state won't provide a taxi since he's not at a state school. Some sort of appeal is in the process but of course it's not how they want to spend her last months on earth.

Very very sorry to hear this Zoe. You must be exhausted and drained by it all. XX
Jane Alexander
Jane Alexander 18 October 2011 at 21:59
Words fail me...just as you're being failed. I hate you being in pain and I hate that you now have mental pain as well as physical...
I wish I could do something but the fecking editors I know don't even answer my emails ...nobody is listening anymore - to any of us. :( xxxxxx
teresa
teresa 19 October 2011 at 09:59
Oh God i'm so so sorry that this has happened,my heart goes out to you and your family,friends,for the horrendous pain you are in.I don't know you,but followered the link.Our goverment needs to .......words fail me,
How can the 'Powers that be' allow human beings to suffer,when they have the know how to give them quality of life?
I really hope that the PCT reverse their ruling and you continue to live your life.
God bless T
Maggie Christie
Maggie Christie 19 October 2011 at 10:38
That is so appalling and I'm so sorry to read it Zoe. People should not have to resort to a judicial review to get the treatment they need. Is there no humanity now? This sort of thing should be protected from budget cuts.
Esther Montgomery
Esther Montgomery 19 October 2011 at 19:21
Horror.

I hope your MP replies soon and that you print a copy here.
Gilly
Gilly 19 October 2011 at 20:33
Oh, Zoë, what can I say ? This is just plain wrong. And you should not have to be worrying whether to spend money fighting it or funding your treatment privately. Nor should you be using your precious time and energy on it. As you said 'shame on them'.
True_Belle
True_Belle 20 October 2011 at 22:46
I am genuinely shocked Zoe. So sorry you are in such discomfort.

What are the salaried NHS penpushers doing to earn their keep.

Please stay strong, something positive will happen soon.