Weʼre raising £400 to Help Fund A Deposit To Move 200 Miles For My Wife's Health Care
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I will keep this as brief as possible, although I make no apologies for the fact that, while trying to explain my wife's horrendous situation, it is not possible to summarise the unbelievable truth of her present existance in a couple of paragraphs.
The NHS in Scotland, by their own admission, are killing my wife and are doing nothing about it.
In order to cover up two botched operations NHS Highland now have my wife on an 'end of days' palliative care Cancer Medication - a fentanyl nasal spray. She does not have cancer. Many Doctors have stated that they have never heard of anyone being on this amount of fentanyl for this amount of time. It has also been stated that the medication is making her ill and, ultimately, killing her. She cannot just stop taking it as she is bodily dependent on it. The medication is causing numerous side effects - the worst of which is strokes and regular trans ischemic attacks (TIAS). The Doctors, although aware of these facts, ignore them.
The background: In 2005 she had an appendectomy at Hospital. For some bizarre reason her appendix was taken out from the wrong side. There is no secondary scar. This means that her appendix was dragged across her bowel to be removed.
This has caused severe internal adhesions, bleeding, narrowing of the intestine and bowel, severe distension, the inability to eat without pain. Her intestine actually comes out of her body several times a day. Unsurprisingly, my wife lives in constant acute, chronic pain.
The NHS have done nothing. No laparoscopy, no operation. Nothing. Sure - they ran 'some tests' many years ago - none of which are worth much. Although some diagnoses made by the NHS in themselves are (should be) enough to generate some treatment.
To make matters worse - yes, they can get worse - she was put on various opiates to kill the pain. About four years ago she was put on Pecfent nasal spray. Please bear in mind that fentanyl is the 'medication' that killed the pop star Prince. This medication is meant for short term use. It is a cancer pain relief which is expected to be taken for a few weeks at most. It is also meant as a 'breakthrough pain relief' and only to be taken in conjuction with a long-acting opiate. She is not on any other opiate. This killer medication is not even prescribed properly. This stuff is more powerful than heroin. Kriss is on 6,200 microgrammes a day. A huge amount. Fentanyl is an anaesthetic. So, my wife has been anaesthetised for four years.
Perhaps the biggest admission of 'guilt' from the NHS thus far is when - four years ago - she was told by a good G.P. that, sadly, due to the level of opiates she was on, including regular morphine injections (particularly diamorphine - medical grade heroin), she was now a morphine addict. Apparently, the G.P. told us, NHS Highland were prepaared to fund a stay of rehabilitation at the Priory Centre. She was devastated and shocked by the news and more than willing to come off the drugs. She was then talked out of the Priory by another Doctor who convinced her to go the local Inverness-based rehab unit instead. She was promised at least two months stay including 'after care.' When she was admitted two things became clear - she could not not physically come off the level of opiates she was prescribed in that amount of time without danger of death and the place was not equipped or used to dealing with anyone with a case like hers. It is a place for people with alcohol and street drug addiction. It was in this rehabilitation unit that a Doctor prescribed her the fentanyl. Why would a psychiatrist in a rehab unit put a woman in the prime of her life who doesn't have cancer on a high level of palliative care cancer pain medication?
So, let me just clarify that: she was admitted to a NHS HIghland 'rehab unit' and discharged ten days later on a more powerful and highly dangerous and inappropriate type of opiate
In August 2016 a Doctor from Edinburgh told myself and my wife - face-to-face - that the fentanyl is killing her. Obviously, he stated that she needed to be taken off it immediately. This would require a correct, medically monitored withdrawal programme. Not a thing has been done.
Our local GPs just keep prescribing the medication. They do not check up on her or monitor her in any way whatsoever. We have investigated the possibility of Private Care and Rehabilitation (which we cannot afford anyway) and have discovered that the majority of 'private' Doctors are NHS Doctors in a different hat and won't take on anything the NHS has started. Also, the rehab clinics we have contacted have stated that they are not familiar enough with fentanyl to ensure a safe withdrawel programme.
My wife has been diagnosed with internal bleeding. No follow-on at all. She had been told that her bowel is 'turning itself inside out.' No follow-on. She has taken several strokes... And been told by doctors that this is probably caused by her medication. She has 'developed' a brain aneursym.
We have complained to the Health Board via their own channels. This just generates a fob off. Obviously they admit to no wrong-doing whatsoever. In the past two years I have been in touch with our MP who received a letter from the Health Board which was unsatisfactory to both us and him. He wished to pursue the matter but was one of the MPs who lost his seat at the last general election. Both the Ombusdman and the Citizen's Advice Bureau looked into the matter, but it turns out they cannot do anything other than elicit 'an apology' from the NHS. We don't need an apology; we need action. The number of pieces of paper we have that start "we are very sorry to hear that you are not happy with..." We are not 'complaining' for it's sake. We are trying to get medical help.
We have also contacted the Health Secretary for Scotland - and received a reply that 'they do not get involved in personal cases.' So, who does? Scottish Govt also informed us that a Doctor is 'free to prescribe any medication in any way they see fit.' I have since been told by several people in the NHS that this is not the case. I have also contacted Palliative Care specialists, the Scottish Medicines Consortium and the CMO of Scotland. All were in agreement that Kriss needs to safely come off the Pecfent, but all are unable to directly help as 'they do not get involved with personal cases, etc, etc.' All the people and organistaions I have e-mailed, written to or called over the years - it has all come to nought.
The Pecfent is not licensed for use in England and Wales. It is not MHRA approved. Why is this medication allowed in Scotlan?. My wife was born in Wales and I am English... yet it would seem that we could not source the Pecfent that she is now bodily reliant on in our home countries. Obviously, no international border would allow her to cross with that amount of dangerous medicine. With so much talk recently of Freedom Of Movement then why are the NHS allowed to take away someone's right to travel - within the UK alone?
Aside from the fact that this is a horrendous case of medical negligence we are sure that her Human Rights are being violated.
We recently used the Freedom Of Information act to acquire her GP Notes from the last thirteen years. They make for very interesting reading - which I won't go into here. Perhaps the two most notable things are the record of a meeting between six NHS Highland consultants on January the 16th which results in 'blocks and flags' being placed on her notes. This action stops her from admittance to hospital via A&E and portrays her as an opiate seeking malingerer to both the out of hours doctor services and the ambulance services. Essentially - "no matter what she says or what seems to be wrong with her just ignore her." This makes sense of the fact that we've travelled the length and breadth of Scotland trying to get medical help from GPs and Hosiptals only to be turned away... often with a very, very sincere apology. So, proof that her notes are loaded and coded and follow her everywhere and colour the (lack of) treatment she receives. Is this allowed? Is this legal?
I was under the impression that every citizen and resident of Britain was entitled to free healthcare. How can an individual be refused treatment to cover up NHS mistakes? Who is in charge? Who is culpable and able to help my wife? What can I do? One man fighting for his wife's health and life against a huge establishment organisation that seems to consider themselves above criticism with a 'do what they like' approach to Public Service?
She has had no life for 10 years. She lives in chronic pain. She is malnourished. She is physically and mentally falling apart. She lives in fear. She is now 46 years old and exists in absolute fear. It is almost impossible for me to really explain the intensity of this situation - nobody can understand the pain, horror and fear of her minute by minute existence. Because of the way NHS Highland have handled her conditions, which they caused in the first place, they have destroyed her life and the life of her family. My wife was a singer, songwriter, musician, writer, actor, presenter and we ran our own award-winning film production company. We have been forced out of employment and onto benefits and into debt. Our children have had to grow up with the sound of their mother's screams of pain. I regularly pick my wife up off the floor as she blacks out from acute agony. How, in any 'civilised' society, is this remotely acceptable?
There is some light at the end of the tunne here - another area of Scotland, near Edinburgh, have said that they will help my wife but we have to live in that region. We have abandoned our family home which we cannot afford to heat for another Winter and move 200 miles away and wait to see what the Doctors say. We are presently satying in Homeless Accomodation provided by the Council, but they cannot keep us there for much longer and can move us out at 24 hours notice. So we need to find a place to rent privately, but cannot afford to save for a deposit. This is why I have set this page up.
Thank you for reading and I hope someone somewhere may be able to help us.
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