Deep Brain Stimulation!!

Hi.

I hope you can help me!?? In 1998 I suffered a Stroke at the age of 32.

This happened in Spain where I spent 1wk in Barcelona Hospital then I was transferred to the QE Hospital here in Birmingham where I spent a further 3mnts.

I then had Brain Surgery & then I was given the all clear the following year.

This was Great News" so I started to rebuild my "2nd" new life!! Thus: new job, returned to driving & had a 2nd child all of which were not though possible in 1998/99.

But in 2004 I started getting further problems!! Following more tests I needed another Brain Operation.

In 2005 I had (SRS) Radiation Treatment at the QEHB which went Horribly Wrong!!

Thus giving me "Chronic Pain" 24/7.

Since then I have been given a number of medications which are either too strong or too weak!!

I have now been to a number off Hospitals (4/5) here in Birmingham.

Leading to being Referred to The John Radcliffe in Oxford. The Constants there told me that I would be put forward for some "Deep Brain Stimulation" "Great"

Then to be told that I can't have the "Procedure" due to "Funding"

I was then refered by my "GP" too another hospital in Liverpool to again be told I needed some "Deep Brain Stimulation"

"Great"

"Not Good"

I was again told that the Funding had been "Refused"

I'm now 10yrs with Chronic Pain caused by the "NHS" in the 1st place.

I have been too more "NHS Hospitals" than I have had "Hot Dinners"

I have seen more "Pain Consultants" than I can count on "One Hand"

I have also been "Told" by numerous "NHS Doctors" that I need "Deep Brain Stimulation"

I have also traveled around the country for "Treatment"

To be told "Yes & Then No" to any "Treatment"

Don't they "Realise" I have a "B/I"

Why have Doctors & Consultants in the first place!!!!

If they all off say I need a treating one day & then not being able the next!!

I have even contacted "NICE" as my condition is recommended on their Website.

This another excuse beening used by the "Hospitals"

Too be told the "NHS" hasn't got to use there "Guidelines"

Why have the "Guidlines" in the 1st Place!!!

If the "NHS" doesn't use them???

I have now seen a "Private Pain Consultant" in desperation!!

I hope that you can help me??

I wouldn't wish this "PAIN" on my "Worst Enemy"

Thanks.

Steve.

14 Replies

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  • Hi Steve, sounds like they've got you running raggered, have you seen PALS? Or even your MP, I wish you all the the very best to get to see someone who can say yes and keep their word but this stupid government have a million questions to answer but they wont because they are above the law.

    Good look

    Philip

  • Hi.

    Thanks, Too date I have been in touch with PALS & many more!!

    I seem to be banging my head against a "brick wall"

    All the time!!!!!

    Thanks

    Steve.

  • Steve

    Funding, or in this case lack of it, will be from your CCG (Clinical Commissioning Group) using an IFR - Individual Funding Request is an application to fund healthcare which falls outside the range of services and treatments which are routinely commissioned. These requests are considered by an IFR Panel which considers evidence of clinical and cost effectiveness, as well as equity for the whole population.

    Your GP should/will have applied for funding. What I have done in the past is to ask the GP for the letter s/he sent and the reasons for the refusal. Once you have the reasons for the refusal you can then challenge them. There will be an appeals process.

    As Philip's reply I'd MP it once you have the reasons for refusal and the ability to challenge.

    Expect the no resource excuse. If so, look at the CCG Annual Report probably Section 1.4 Remuneration and see what the GPs Board members are being paid - mine are being paid £80K for a 2 day week. You may want to suggest that cut some fat from the CCG Board costs to fund your care.

    HTH

  • Hi.

    Thanks for your email, to date I have done all of these with no joy at all.

    2 * GP.

    5 * NHS Hospitals.

    6 * Pain Consultants.

    I * Private Hospital.

    1* Private Pain Consultant.

    1 * Local MP.

    Contacted: PCT, CCG,Ombadsman+more!!!

    Still no joy to date!!

    I can't do much more as my health isn't any good at all so I'm "Damed if I do or Damed if I don't"

    Thanks.

    Steve.

  • it seems you have been in the wars. I hope you get better soon I which I could do some thing it must be awe full I hope you the best of luck for the future. George.

  • Hi. Thanks it has been the same from day one (1998) I should be used to it by now!! Many Thanks Steve.

  • Hi.

    Many thanks for your email.

    Don't worry!!!

    Steve.

  • I am so sorry how things have gone for you.

    Do you know how much the Deep Stimulation will cost?

    Is it a one off thing or is it a series of these?

    Is it something you will have to have keep on having regularly to keep you better?

    You need to get a Panorama TV program done on you and your circumstances to bring it to attention of many more people and hopefully the Prime Minister. It must be a program that Panorama would like to do so I guess you need to email inquiries to the BBC's Panorama. Here is a link to how to contact them and how to apply with your story, your life.

    bbc.co.uk/programmes/articl...

    This Deep Stimulation equipment must never be used on anyone at all

    Why have it but not use it?

    Good luck

    I hope to see you on the TV

    Best wishes

    Susie

  • Hi Susie.

    Many Thanks for your email. I have had two prices to do one for £40k and one for £20k + Exrtra's. This would be a one off cost.

    We also considered:

    Pain Pump + Morpine. or Spinal Cord Stimulated. But these two wouldn't work on their own so "DBS" is the last chance of "Pain Reduction" for me!!

    Thanks for the link I will have a look shortly.

    Steve.

  • I have had a look at some of the other replies which are sympathetic to your situation. This allows me to be more forthright which hopefully will give you some ideas as to what to try.

    You need to face some rather unpleasant facts. There is no money in the system and the government in order to do its job has to prepare the population for money saving measures. In the years following the second world war there was a baby boon. These baby boomers are now retiring and there is not enough people of working age to fund the pensions, benefits and other funding needs that the government needs to fund its everyday activities. Too quote a member on my local council, who helps manage the welfare budget, who said just before the election "if one party gets in its apocalypse if the other party gets in its Armageddon take your pick". That person has a greater handle on the figures than I have.

    In a nutshell there is going to rationing of medical care. I fund some of my medical care out of my DLA. I am going to lose this at some point in the near future when PIP applies to everyone. I am going to have to see what I can reduce on my expenditure to fund my treatment from my ESA.

    There is a personal health budget available to everyone come 2016 and what difference this makes I do not know as the local CCG is very tight lipped on the subject.

    You state that a medical treatment went horribly wrong. You need to discuss with the legal people your situation to see if you can be compensated for a medical accident or negligence to pay for the treatment you need to help with the pain. Medical Law is very different from other rules of negligence that I have no idea what your situation is. There is a time limit of three years of discovery of the cause for the problem and because it is discovery you may be in time or you may be out of time.

    avma.org.uk/

    is a web site you need to visit post haste.

    You know need to start looking at the complementary medical alternatives. What is available that can help improve my quality of life. A slight reduction in pain and discomfort will be an improvement and give better quality of life. Things that come to mind is meditation and mindfulness. Pain and discomfort can be increased by emotional overlay and attitude. Reduce the emotional overlay and change the attitude and the pain and discomfort reduces. There are Buddhist monasteries where you can go and learn these techniques.

    There are McTimony chiroprators who can unspasm any muscles that are in spasm which will help reduce the pain and discomfort situation. There are Alexander Teachers who can help you with posture and thus reduce reduce the posture input into the pain and discomfort situation.

    Unfortunately these sort of things require paying out of your own pocket.

    Hope I have been able to give you something constructive to use.

  • Hi. That is great thanks!!!

    I have got an appointment next Monday at a NHS Hospital to look into DBS Treatment. Hopefully they can help?? I was closer to having done there 2yrs ago. As the hospital here seemed to think that they could get me the treatment done in Oxford. That is s defiantly a no go now so hopefully Liverpool can help me!! Thanks for the info.

    Steve.

  • Hi I gave had DBS privately 18 months ago for pain . Lyme disease attacked my facial nerve system. It worked . I now work full time again. Got my life back completely. The taxes I now pay working would have more than paid for the operation on the nhs . it cost privately £22000 , £3000less than quoted as I made an amazing recovery and stayed just 2 nights in hospital. It was done by Nik Patel at Bristol now south mead hospital, was at frenchay ( that closed recently) the leading neurosurgery hospital.

    In my opinion Nik is one of the best neurosurgeons in the world. His pioneering techniques become best practice , worldwide.

    Gave up on the nhs as I was in so much pain and the funding outcome did not look good. What annoys me intensely is that NICE have based their judgement on too wide a pool of pain relief by DBS to look objectively at the results. Nik has had 100% success rate but that is masked by other not so successful cases where things did not go so well for different types of pain. This is one area to concentrate on in any campaign and letters to MPs etc .

    I strongly suggest you see him if you have no joy at Liverpool at least to assess your outcome. A private consultation will set you back about £50 at spire hospital if you don't want to wait too long.

  • i sympathise... HITTING ANOTHER BRICK WALL :-( referral=stall+pass the buck

    ... THE MORE I READ THE MORE FRUSTRATED I GET.

    This country is in a mess.

    SOMAT HAS TO GIVE?

    How have you got on dude? Hang in there-GOOD LUCK!

  • I'm sorry too Steve!

    I had a stroke in 2008 and the stroke pain starting about 4months after. I was refer to Prof Aziz in Oxford but there was no funding in Suffolk. Pain Clinic try lignocaine infusion - more pain! then ketamine infusion which helps a little but not good. I'm sure you have the same sort of drugs too!

    Oxford told me that the funding is the health government but today I read that "NHS England will not routinely commission Deep Brain Stimulation for Chronic Neuropathic Pain. It has considered the place of this treatment in current clinical practice, whether scientific research has shown the treatment to be of benefit to patients," england.nhs.uk/commissionin...

    For me, and you too, I would like to try!

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