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
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
Comments
Thanks for the support and encouragement though, means a lot
xx
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 xxx
xx
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.
I really hope your eloquent letter has the desired result. Local press/national press/radio??
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
Big hug. I am praying for a miracle to happen xxxx
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
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?
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
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
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.
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
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
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
Very very sorry to hear this Zoe. You must be exhausted and drained by it all. XX
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
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
I hope your MP replies soon and that you print a copy here.
What are the salaried NHS penpushers doing to earn their keep.
Please stay strong, something positive will happen soon.