My life as a carer?
Oh where do I start with being a carer for someone with ME? There are so many aspects to being a carer. Some people care for a disabled child along with the rest of their family, or an elderly relative along with working or their own family. Others care for a disabled relative or spouse, which requires many hours care a day and night.
Anyone who knows anything about ME and the many misdiagnosed diseases, will know that they have a unique set of problems that no other diseases suffer from. One's experience of caring can be totally governed by the standard of support the carer and cared for person receives from their support agencies.
I remember the day that M.E arrived in my life, as though it was only yesterday. I presume Wendie had known about it previously, although at the time it was only Glandular fever and a general feeling of being very unwell. I guess with Wendie having been in the health service, she would presumably understand what it was all about, but over time, I have come to realise that isn't necessarily true.
Glandular fever became EBV which in turn became M.E (otherwise known incorrectly as 'CFS') In the early days and years, caring was only really assisting Wendie when she was too weak or ill to function as normal, but bit by bit, your role grows to the point where a normal week seems to be a seamless cycle between working full time, then on leaving work, you immediately start again with the essential home jobs, that are no longer possible for the ME patient, such as shopping etc, as they are gradually losing the ability to walk far or carry weight.
The daily meals, twice weekly washing etc and general work extend your working day from what was normally a 12 hour day, to something more like 15 hours a day which also includes weekends. Then eventually the time comes when annual holidays are no longer possible, as travel is far too stressful and tiring for someone with ME, to gain any overall benefit from the change of environment.
With most people who gradually become disabled, there are services to help them along the way. Their GP is generally sympathetic and knowledgeable about their condition. BUT sadly, that is NOT the case with ME. In the 1990’s, people with M.E were told from the point of diagnosis, that there is nothing the NHS can do to cure their condition. Also that they should not believe anything they read or hear about their condition, (note it is rarely called a disease, even though it was recognised by the WHO in 1969 as the neurological disease G93.3 ICD 10).
Basically they were cut adrift from mainstream NHS services and expected to deal with the disease in isolation. This has resulted in tens of thousands of people with ME struggling for a decade or more, with this slowly debilitating disease alone, not really knowing what is actually wrong with them. Although there were local ME support groups in majors towns & cities, people with M.E were not always aware of them, and very soon their condition becomes so debilitating, that they become housebound, if they do not have anyone to move them around outside in a wheelchair.
This then leads to major problems attending GP surgeries and hospital appointments etc. All of whom have very little knowledge or interest in ME, as they were told by the NHS that it is a psychosomatic condition and should be treated with psychiatric Mumbo Jumbo such as pacing your daily life. At a later stage they may be offered Graded Exercise Treatment, which results in 80% of ME patients getting worse and Cognitive Behavioural Therapy, which is intended to convince PWME that they are not really chronically ill and much of it is in their heads.
The NHS ME/CFS units are a perfect example of the calamity of justice and neglect that people with ME had to endure through out their illness. Hospitals called patients in periodically, but offered very little hope of improvement. Some recommended pain clinics, but in the 1990’s the pain clinic staff had very little experience of treating someone with any real degree of M.E, so very little benefit was gained, and they were often discharged feeling worse for the experience.
Although big M.E support charities talk about many of the problems that ME patients have to cope with, they do not actively address then in their role as M.E medical advisors to the Medical Research Council, so the NICE guidelines have hardly changed for the past 30 years resulting very little progress being made in the day to day lives of PWME.
It has been said that treatment and care for M.E patients was better before the invention of the 'CFS' theory, mainly because GP's and Dr's had to treat it as the Myalgic Encephalomyelitis disease that Melvin Ramsay described in the mid 1950's, following the London Royal Free outbreak and the WHO recognition of M.E as a neurological disease in 1970. Since the 'CFS' diagnosis became established in the late 1980's, care and treatment for people with M.E from NHS services has in general, been a minefield of misinformation and ignorance throughout the whole system. Anyone who is fortunate enough to find an interested GP is very fortunate.
So I guess you are now thinking, what has all that got to do with me being a carer?
Well for fourteen years we struggled through, putting many of the problems Wendie incurred down to bad luck and difficult people. Our GP who was scathing in his attitude to M.E. On one occasion, the GP had failed to cure a persistent chronic cough that Wendie had suffered for over three months. This led to Wendie damaging her vocal cords and having a weak voice ever since. One of the GP’s locums told Wendie to join a choir, to strengthen her voice. She also stated that there is no such thing as pain. The was a constant stream of junior hospital Dr's who offered nothing year in, year out on every twice yearly appointment. The pain expert who had never treated someone with M.E. The endless stream of carers who don't have a clue about caring for someone in constant pain with noise & light sensitivities. The physio that tries to 'cure' your M.E problems, rather than the job she was sent to do. The district nurse who has no comprehension of M.E. The list has been endless and is still growing.
For those fourteen years, I was working full time and trying to deal with many of these problems, or trying to find alternative ways to make up for the failings of the NHS support system, that was failing Wendie so badly. In the end, even my own health began to suffer with sleep problems, digestive problems and being generally run down. The GP’s and hospital Drs could not get to the bottom of it until one day, I was so tired, I fell asleep whilst driving home one dark and cold November night. Fortunately, it was only a fleeting nod off and I woke to see an array of red breaklights at the approaching roundabout and was able to stop before a collision. This was the wake up call I needed to get some help.
I was diagnosed with depression, which surprised me because I didn’t feel down, just always tired. But I was in no position to argue. I took the tablets and the advice and tried to change my life as much as possible. Not too long after that, the company I worked for became victims of poor management and the 2008 banking crash, so I was one of the 50% who lost their jobs. I decided that my health could no longer stand another fulltime job and my caring responsibilities, but due to the chances of finding part time employment in my field of work proved to be impossible, I decided to become the full time carer of Wendie. Within 6 months, most of my unexplainable health problems went away and it was assumed that they had been stress related.
With the free time I now had on my hands, I decided to try to sort out all the problems that Wendie had been subjected to, by the NHS support services. I went back to the local M.E support group for initial advice, but unfortunately their advice was the same as that given to me two years earlier. So I decided to follow it again but this time, not accept being fobbed of by everyone concerned. I initially asked for a re-referral to the local ME/CFS services unit at Fairlawns. I also closely monitored the response that Wendie was getting from our GP. I requested a dietician to see Wendie, which eventually came and was quite useful.
In parallel with that, I did an enormous amount of online and library research into how M.E came about. Mainly back to the first real recognition the disease got by Melvin Ramsay in the mid 50's, who named it Myalgic Encephalomyelitis and to this day, his views are still highly respected among those who really understand M.E and was confirmed in 1969 by the WHO recognition that logged it as G93.3 ICD 10. I then read about how negative influences arose, that challenged Ramsay's views on M.E by the likes of McEvedy & Beard around the early 70's. Later I read large sections of Hillary Johnson's Osler’s Web, that told the sordid story of how the ME outbreak at Lake Tahoe in Nevada USA, was covered up and the resulting fabrication of 'CFS' by the CDC's & UNUM, that was intended to subjugate M.E, to initially benefit UNUM, whose sole priority was to massively reduce the spiralling growth in M.E diagnoses, that were costing them millions in private health care claims in the US.
UNUM needed a psychosomatic solution to this problem, to enable them to avoid these claims and the convenient excessive emphasis on fatigue in the 'CFS' diagnosis, fitted their bill perfectly.
This led to the corrupt diagnosis of 'CFS' seeing the light of day for the first time in the mid 1980's. This was then proselytized around the M.E world like a new religion, by the likes of Simon Wessely and the Liaison psychiatrists who entered M.E in a big way. Later the DSM's pushed their influence to greater levels, to the point that most Health services around the world only followed their psychiatric view on M.E.
Eventually the re-referral to the Fairlawns ME/CFS unit for a more up to date assessment arrived. They suggested a home visit to access the situation. The Physio who came to access Wendie, said that they may recommend a stay in an ME unit in Leeds. I asked what that would involve, and he said that they would use graded exercise therapy to ‘help’ her. Even with the little knowledge I knew at the time, I knew about Sophia Mirza’s treatment by psychiatrists using GET and that it would probably harm Wendie. I suggested to him that it would harm Wendie, if not kill her, which he did not appreciate. I hoped that was the last thing we would hear about GET so I then forgot about it.
Following their visit, they sent a letter to our GP and to us, recommending that Wendie be given a ten week in-patient stay in the ME unit in a Leeds hospital.
On the face of it, this seemed good news, although it seemed a long hospital stay and a long way to travel, but we went along with it. The GP had to present the recommendation to our local PCT for funding. We were led to believe it would consist of a couple of weeks of settling in, then general medical tests and checks etc. This sounded like something Wendie had in the Sheffield Hallamshire hospital around 2002. Beyond that, we were not really very well informed at all about what would happen.
We waited two months, then chased it up, only to find that the referral to the PCT had been lost by the GP. Fortunately I still had our copy, so took it down to the GP myself and made sure that it was signed by the GP's and sent that day.
Again after a long delay, which was by then the new year of 2010, we received a reply from the PCT refusing our request to fund the hospital stay, on the grounds that Wendie had failed to engage with the local NHS services. This non-engagement they referred to was the period when I was working and Wendie was both ill and struggling badly to get lifts to hospital appointments. She only actually missed two official appointments, but postponed them a couple of times each by phone, in good time for the hospital to allocate the appointments to other patients. They certainly know how to kick someone when they are down.
I immediately submitted an email appeal to the PCT, against this refusal decision, followed by a telephone complaint to the PCT manager. Still they refused to bend. So I contacted the Sheffield Star and told them everything about the failures in care and treatment for people with ME etc. Much of what I told the Star, they did not print, but credit where it is due, they gave Wendie a fair deal on their coverage. This resulted in us being offered legal help from a top solicitor, that we eventually did not need, as the PCT backed down and agreed to pay in instalments. First four weeks then the rest dependent upon how Wendie coped with that.
At this point, I decided to find out just what the treatment on the ten week stay consisted of. Due to the publicity in the press, Wendie had been contacted by some former patients from the Leeds ME unit, who filled in many of the missing pieces that Fairlawns failed to tell us about. The first month was a settling in period and general heath check up including relevant tests etc. At the time, the unit had an Occupational Therapist and a clinical immunologist. These people, we were advised, were the best thing about the Leeds ME unit. It also became apparent that the hospital was actually a psychiatric hospital ward, with two beds for ME patients. The final six weeks were an intensive GET & CBT course, which by then I had found out were a fate worse than death for most severe ME patients. We were pleased that Wendie would be getting the important part, but hopefully would miss out on the torture.
Shortly after Wendie was given the funding, the Occupational Therapist and Clinical Immunologist were made redundant and the management of the ward and treatment was handed to a liaison psychiatrist (the same type of psychiatrist as Simon Wessely)
Whilst I had the attention of the PCT, I put in a written compliant about our GP, who had been as most GP's are towards PWME, somewhere between useless and negligent. This resulted in me appointing an advocate from Independent Living and attending a meeting with the main GP partner. I took five main points that we wanted addressing. We got three of them and another one a year later, via a district nurse. The GP's attitude has been better since then, but much of that improvement could be down to the crisis that was about to hit us.
In May 2012, Wendie was diagnosed with Cancer and the day after my mother died. Just before the operation, Wendie was informed that a place had been found for her in the Leeds ME/CFS unit, but it had to be cancelled due to the urgent operation. A number of months later we heard that Fairlawn’s were most indignant about Wendie not attending at Leeds. It seems that Cancer is not an acceptable excuse for avoiding psychiatric abuse in NHS ME/CFS units.
From the moment of being informed of the Cancer diagnosis, Wendie's care became like Premier League standard compared to the Non-league standard ME care that she had suffered for the previous 17 years. Although the curse of ME was still lurking in the shadows, with ignorant auxiliary nursing staff, who did not accept that people with severe ME had light sensitivities and could not walk unaided or care for themselves without assistance.
These sort of problems occurred again with district nurses and physio's after the radiotherapy treatment. Unfortunately, no exceptions are made for PWME taking longer to recover from Cancer operations and radiotherapy and as the time approached 12 months, the Premier League care started to slip backwards. Small things like regular district nurse visits became less dependable and further apart. The physio's became increasingly impatient with Wendie's inability to walk following radiotherapy and seemed to be more interested in curing her light sensitivity by opening the curtains until they both them and the nurse pulled out. Before you ask, we never saw the McMillan Nurses.
Following Wendie’s release from Radiotherapy, the Social Services insisted on changing the local NHS carers for a private care agency, who to be frank were awful. It was like being put on a production line. The standard of care was the last aspect the care agency cared about, just getting round all clients in the shortest time was their only priority. Continuity of care were foreign words to them as Wendie had 40 carers in three months. This led to a three month struggle with the agency to get them out and another more acceptable one in.
One of the deals I struck with the Social Services at the changeover from NHS to private care, was to have Wendie's tablets delivered in NOMAD packs so that we could deal with them, mainly because we didn't want them coming four times a day and I didn't trust them to do it right. I also took other jobs off them because they made such a mess of it. The idea was if they had less to do, they may do the remainder of care better. But they didn't. They just left earlier.
All the failing services required hours of complaining to various different agencies and offices which was all unnecessary extra stress for Wendie, at a time when she was supposed to be recovering from one of the worst things in life that can happen to you. This all went in parallel with losing both my parents and Wendie's mother and me breaking my hip in a bizarre accident in Weston Park hospital. So as I said at the beginning, how hard caring for someone with severe ME can be, is down to the quality of the support that you are given.