In an ideal world…

….. what would I actually want and need from a good health-care service?  We whinge a lot about what we don’t receive and don’t talk about what we’d ideally like.


A poll was conducted recently on the ME Association website about this very issue, and number 1 on the list of things we’d all like is simply to be believed.  It’s not much to ask is it, doesn’t cost anything, but would make a massive difference to our experience of living with chronic illness.  Yet I know it often doesn’t happen.

My first example of not being believed took place when I was just 14 years old.  I’d had back pain since I was 11, brought on by a fall through the 1st floor of an outbuilding, yet because nothing showed up on x-rays and I complained that physio made me worse not better, I was told I was attention seeking and was obviously just unhappy due to problems at home.  And then when I was 16 CT scans were invented.   I insisted on having one, which showed rare congenital spinal stenosis necessitating urgent decompression surgery.  Obviously it’s not the medical profession’s fault that X-rays don’t show this kind of issue and CTs weren’t available, however to tell a teenager who is sleeping on a board due to severe back pain and can no longer take part in the sports she loves that her pain is “all in her head” is wrong on every level.  This disbelief and blaming of me, the patient, for my own health issues has been a long running theme throughout my life and makes me really, really angry.  That anger transfers as mistrust in the medical profession, which in turn does not lend itself to good relations with my caregivers.  All it would take for this mistrust not to have developed would be for a doctor to have said to the young me “I know you’re in pain, I know there’s a pysical problem, but unfortunately we don’t yet know what that problem is.  While we figure it out we’ll work together on pain relief until we find something which works for you”.


Hot on the heels of being believed is to be treated with empathy and compassion, which you would think is the bedrock of medical care yet has been largely absent in my dealings with doctors.

Following meningitis, I was bedridden with M.E. for a decade during which time I spent 4 months in a semi-coma unable to open my eyes and crawled to the loo and back on my hands and knees.  Yet I vividly remember a visit from a GP who said to me and I quote “my wife is away, I have 2 children and a full-time job – you don’t know what tired is!” and he was deadly serious.  A subsequent visit from a locum GP told my parents I was so critically ill I might not make it through the night and asked whether I wanted to spend my final hours at home or in hospital.

We’re not daft enough to think that doctors have all the answers to our health issues, but to be treated with dignity and respect costs nothing and I do expect that from the people involved in my care.


I have been ill now for 26 years and during that time I have had no monitoring from my GP, nor anyone else.  I was bedridden for years, which can cause pressure sores, muscle wasting and issues with continence, yet I only ever saw my GP if I requested it and was never visited at home by a nurse.

As we age, regular monitoring becomes ever more important.  We are more prone to osteoporosis, blood pressure issues, high cholesterol and heart problems due to lack of activity, plus vitamin D deficiency if we are housebound, and things like low thyroid function, B12 deficiency and anaemia are easily missed when one is exhausted all the time.   It’s not too much to ask to have a yearly medical and blood tests.  It would cost peanuts in the scheme of things and take 15 minutes of a nurse’s time (30 mins if they had to come to the house).


Getting on to the nitty gritty of living with chronic and or/complex diseases, I’m sure all of us would love a single point of specialist contact like MS patients have with their MS nurse.  My GP is really nice and very approachable, but getting in touch with her is like pulling teeth and she has 7 minutes in which to speak to me, consequently our conversations are rushed and stressful and I know she can’t wait to get off the phone and on to her next patient.  Nurses often have more time and if one had been trained in my particular illnesses and I could ring her for advice on a particular injury, or worrying symptom, a change of drugs or even simple things like being consitpated it would make the world of difference to me.  I have felt utterly alone in dealing with my diseases over the decades which has definitely impacted my mental health.


We are very lucky to live in the digital age, yet here in the UK we seem to be stuck in the 20th century.  When you have a disease like M.E., and just getting dressed can make you feel like you’re dying, medical professionals need to make more use of the internet and Skype appointments.  We don’t always need to be physically present for a consultation and it would make the world of difference to severely ill patients if they could speak to medical professionals over the net, or even over the phone!  This is particularly important for patients, like myself, who live in rural areas and have to travel huge distances to hospital.

As my regular readers know, my Dad is having health problems and is under the care of neurology at a hospital 90 miles away.  We had an appointment recently with the spinal surgeon.  It had taken us nearly 2 hours to get there, the Clinic was running late so we’d sat in the waiting room for an hour, and we went in to the appointment only to be told “I’m not going to do your spinal surgery until you’ve seen the orthopaeds about your hips, so make another appointment at reception for about 6 months time.”  Really?!  Literally an entire day spent travelling and sitting around a hospital for an 80 year old with crippling back pain for that, when he could have rung us and said the same thing.


This is the Holy Grail for anyone with multiple and/or complex diseases.  At the moment each Consultant deals with their particular speciality and doesn’t talk to the other health-care providers.  My Dad is a case in point.  He needs spinal surgery so is under the spinal team at Newcastle.  He’s also under neurology at Newcastle due to severe neuropathy.  He’s been diagnosed with the auto-immune disease Sjogren’s Syndrome, so will be seen by Rheumatology at our local hospital.  He also has a kappa paraprotein in his blood so is under Haematology at our local hospital.  He needs a hip replacement, so is being seen by Orthopaedics at Hexham hospital.  He is B12 deficient, so has injections at our local health centre from the nurse.  He needs cataract surgery, whichis being performed at Sunderland Eye Infirmary.  And his GP works 2 days a week so we can never get an appointment with her.  There are times I’ve literally pulled my hair out trying to co-ordinate his care and, before his diagnoses, for each Consultant to speak to the other Consultants about his symptoms.

Because each Consultant works independently, care is not continual.  Again, my Dad is a classic case.  The local muscular-skeletal team knew he had spinal stenosis so referred him to the surgeons at Newcastle.  He was then seen as a new patient, so his MRI was unnecessarily repeated and he was then placed at the bottom of an 8 month waiting list.  When we finally saw the surgeon he said my Dad had more pressing issues with his nervous system, so referred him to neurology where he had yet another unnecessary MRI scan, then was seen as a new patient and placed at the bottom of a 6 moth waiting list (it was only my huge efforts for him to be seen urgently which resulted in a faster appointment).  The neurologist ordered tests for Sjogren’s Syndrome which came back positive, so referred him to Rheumatology where he is now being seen as a new patient, will have all his tests unnecessarily repeated and placed at the bottom of an 8 month waiting list.  And so on ad nauseum.  It has taken 1½ years to finally get to the bottom of his multiple issues because for each referral he was treated as a new patient and all the tests and investigations were ordered afresh.  If you are referred by a Consultant to another Consultant you should be treated as an ongoing patient, which would mean much faster appointments.  Test results also need to be transferred with you so they don’t have to be repeated!  It’s not rocket-science, particularly when we have the internet and patient records can be accessed online from any hospital in the country.


There will always be times when you need to seek specialist help, however accessing knowledgeable Consultants is usually the hardest part of having rare and/or misunderstood diseases.

There are various ME/CFS clinics around England – my nearest is a 180 mile round trip away.  There are only 2 specialist EDS Centres in England – both are a 6 hour round train journey away, and in any event don’t see hEDS patients who also have M.E.
My nearest MCAS consultant is also a 6 hour train journey away, and recently refused to see me.
There are no specialist services in Scotland, Wales or Northern Ireland for any of my 3 diseases as far as I’m aware which is a disgrace and I’m surprised patients haven’t banded together and sued the health service for lack of care.

My GP is under the impression that, having been diagnosed, I don’t need to see a Consultant because none of my conditions are curable and she can provide ongoing care.  This is not the case.  I have severe endometriosis and need a hysterectomy.  I was seen at the specialist endo centre, 90 miles away, last year but due to my severe MCAS-related drug allergies they wanted to speak to my Mast Cell consultant before deciding on surgery.  Only, I don’t have one and because there was no-one for the Gynaecologist to consult with over my MCAS she decided blind surgery would be too risky, so I’m now continuing to live with excruciating chronic pain instead.  A few years ago I needed a tooth extraction.   I had to have this done in hospital as the tooth roots were near my sinus cavity, and again the Dentist wanted to speak to my MCAS consultant about how this would impact my mast cell disease.  Only, I don’t have one.  I recently had an endoscopy for my stomach issues and severe GERD and in order to know if my issues were mast cell related I needed a biopsy where the cells were ‘blue stained’.  I requested this, only they wouldn’t do it because the order hadn’t come from a Consultant.  That’s because I don’t have one.  So now I know I have gastritis but not why.  It’s for situations like these that having a specialist referral point is so important, yet they are lacking for the majority of M.E., hEDS and Mast Cell Disease patients.


Notice that not one of my wish list includes actually being ‘cured’.  I know that’s not possible, but just because I can’t be ‘cured’ doesn’t mean I shouldn’t be monitored or have access to specialist services should they be needed.  Two of the items on my wish list would cost money, but the majority would either cost nothing or peanuts.  All it would take is a will to offer services for severe, chronic and/or complex patients and it’s the will which is lacking, for which there really is no excuse.

3 thoughts on “In an ideal world…

  1. Sarah

    I’m having banging headaches so having trouble reading your posts at the mo. I just wanted to say I’m watching a fascinating programme called Diagnosis on Netflix. It’s the Dr who helped write the programme, House. She uses the New York daily times to ask people worldwide if they can help with rare diseases and hopefully giving that person a diagnosis
    Take care. Willread thislater x


    1. Jak Post author

      So sorry to hear about your head pain Sarah, and totally empathise 😦 Don’t feel obliged to read anything – just take a break and look after yourself. Jak x


    2. Sarah

      I had a hysterectomy and ended up with an ileo-inguinal neuroma, bedridden and crying in pain. I had an op on my foot 5 years previous to that and ended up with complex regional pain syndrome and actually asked the dr if I could have my leg amputated below the knee. I know these outcomes are related to the MCAS. It can’t be a coincidence.
      If I were you, I would ask if an ablation of the uterine wall would help your endometriosis. At least that’s an up and in procedure not a cutting open one, if you know what I mean 😉
      Sarah x

      Liked by 1 person


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