Experience of Care in the NHS with ME

I love the NHS. It brought me into a career of care by working in community clinics and hospitals. I have a lot to be thankful for with the NHS and I have great admiration for those that work within it. I’m writing this with a heavy heart to show an area where it has failed to live up to expectations.

I, alongside three other members of therapists, had our careers cut short, all within the same year, due to Myalgic Encephalomyelitis (ME) . I hadn’t taken a day off sick before my virus struck and I returned to work after about a week. I didn’t feel much better, but I felt I should be feeling much better. This was the pattern of the next year but every time I tried to push on through, the fatigue pushed back harder until I was barely able to function at all.

It was scary to be incapacitated without having answers. It was even worse to have answers that were formed on stereotypes rather science. As blood tests started to come back negative it only confirmed in the doctors eyes that the problem was in my head. I was told it was due to stress and depression, I was told I was just looking for a way out of work, I was told to ignore it and just get on with life. Then came the diagnosis CFS/ME. They were far more keen to talk about my lifestyle, relationships and work than my symptoms and were reluctant to send me for further tests as these would “probably come back negative too”.  Despite never feeling depressed it was hard to challenge their conclusions without my husband being present and vouching for me. I felt ashamed of my illness and that somehow not only was this all my fault but I was also wasting everyone’s time so I stopped going. I was told it would either get better on its own or I would learn to live with it.

So, I’ve learned to live with it. The best way I’ve learnt to live with it has been connecting with others online. This changed me from being ashamed of my illness to campaigning for better understanding and provision as my own experience of ignorance and neglect was distressingly all too familiar. Don’t take my word for it, take a look online yourself. Many people with ME (#PwME) are recounting their own experiences on blogs and social media all around the world with chilling familiarity.

Not being believed and understood can be distressing but being prescribed Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT) can be disastrous. These programmes work on a patients ‘false illness beliefs’. A report by the ME Association in 20015 discovered 74% of patients have reported harm from undertaking GET/CBT.

Taken from ME Association Study 2015

New research demonstrates that patients have physiological problems with their energy production and advises against prescribing exercise. (See Keller et al)In fact, the very hall mark feature of ME is post exertional malaise. It seems to me that the false illness beliefs lie with practitioners rather than patients!

“The fact is that a progressive and sometimes rather inflexible increase in physical activity, the key component to a treatment that is based on the scientifically flawed deconditioning model of ME/CFS, is just not appropriate for a significant proportion of people with ME/CFS…

If a drug treatment were causing this level of adverse reactions, then serious questions would have to be asked about its use – certainly by non-specialists.” The ME Association

I’m one of the fortunate ones with ME. I’ve had a long period of good health in between my 20 year span of ME, but trying to recover is like playing a game of snakes and ladders: just when you think you’re near the finish line, you seem to hit a long snake back to the bottom!

It really saddens me not to able to be more positive about the treatment I’ve received in the NHS. There is so much more I could add to the list of hurtful comments, attitudes and aspersions. However, I’m still passionate about all it stands for and I’m optimistic that one day things will change. It’s been 20 years since I was first diagnosed with ME/CFS and I have just found myself a GP that has been really helpful. She admits she doesn’t know much about ME and there is no specialist unit to refer me on to, but she has been willing to listen and do her own research. This is a more promising starting point. I do hope that this is the start of the change…

My NHS wish list:

  1. Believe patients with ME! There is nothing they want more than to be well and active again.
  2. Stop prescribing GET/CBT. (See StopGET.org )
  3. Better funding for biomedical research
  4. NICE guidelines to be updated taking into account new biomedical research findings and the debunked PACE trial study.
  5. Training for doctors and medical students using current research
  6. PACE trail retraction. This has harmed many patients and hampered attempts for biomedical research. Scientists in all disciplines have signed an open letter calling for it’s retraction. (See here)
  7. Specialist ME centres across the UK.
  8. Better funding for our much loved NHS!

NB: This was a rushed post as part of Experiences of Care Week #Expofcare

What are you worth?

how much are you worth pic

They are typical conversations starters: “What do you do?”, “What have you been doing?”,  “Have you been busy recently?”

For busy sorts who seem to be able to cram a weeks worth of activities into a day, the question can unleash a breathtaking tornado of replies that leaves the questionner quite dizzy, and surprised that they still found the time to talk to you!

When first impressions count, who in their right mind would want to admit “not much”?!

Society recognises hard workers and achievers. We invest a lot of time, money and effort  to become ‘successful’, we are told that ‘hard work pays’ and people who contribute to society are rewarded with honours and decorations.

Social media can tell us how much we are worth by a Klout Score. (Basically, a number between 1-100 that represents your influence depending on the quality and quantity of your followers.) I’ve always thought it would be unhealthy to look up mine!

We need to be wary of building  our identity on what we do, where we’ve been or who we know, or even how others see us; what we wear, what we drive, where we live, where we go or even our Klout scores!

According to The New Statesman, there are only 50 people who do matter! Does that leave the rest of us worthless?

50 people who matter

 

Illness can strike anyone at any time and can easily strip you bare of self worth. It can leave you wondering how much of the real you is left. Does it mean that your worth has plummeted, or in Klout terms, been reset to zero?

It’s a thought that has always been near the surface for me. I’ve worked with young people for decades in a voluntary capacity and one of my over riding aims is for children to recognise their own true worth. However the full weight of this has only hit me since my ME relapse in September 2013. I am no longer a professional woman, I no longer mingle with people in the public eye, I no longer lead at church, I’m no longer the do-it-all Mum, and I’m no longer the person that can give practical help to others.

Humour and friendly banter is  always present in our house.no such thing as... I know when I asked my Son to get something out of the fridge for me recently, his reply was intended that way. However, the once edifying fridge magnet that was thrust into my face now had a chilling sting to it. It read “There is no such thing as a non working Mother”. Had I become “no such thing”? To become invisible to the world is one thing but to become invisible to your children is quite another.

As Christians, we profess unconditional love and grace from a God who created us. When the penny finally drops that there is nothing we can do to make God love us more, and nothing we can do to make God love us less, it is truly liberating. Demonstrating this to one another, however, can be more challenging.

It’s been sobering to discover that the only communication that comes from some people is when they want you to do something. People that I had invested time, energy and sacrificed much for with a shared conviction and purpose. It hurt when even a simple ‘thank you’ or ‘take care’ never even came since my illness. The silence can send you back to ponder “what am I worth?”

Thankfully, there have been many more who have stood by me, illness and all. The scale of the gesture isn’t important but knowing that people still value you for who you are and not what you are has been a blessing. It can be the simplest, briefest of comments that can make the difference to your day and make you feel visible again.

This might not sound surprising in an individual way but corporately we need to take care too. In churches, we should be wary of only promoting the good news stories. We love to celebrate lives transformed and people healed. This is only right and I would probably be among the first to lead the whooping! However, we need to be honest, real and authentic in our lives and faith. There are people whose struggle only goes from bad to worse. Does the fact that God hasn’t answered their prayer with healing mean they are worth less than others? Of course the answer is no, but we need to demonstrate that in how we behave and treat one another. Admitting things are rubbish when they are doesn’t compromise our faith but authenticates it. In my experience it’s been much easier to find Jesus in the rubbish than in the glitz!

When people’s reactions have been so unpredictable I’ve been so grateful for the love of my family and sure certainty of God’s grace. God’s gentle whispered blessings have at times been deafening and have come from the most unexpected of places.

In the world’s eyes I could be seen as broken, lifeless, and spent, but the last 10 months have taught me a lot about myself and others. I pray that I will always see the true value of people around me and reflect their worth through God’s eyes no matter what their situation.

So what am I worth? What have I become? I’m certainly not the same person that I used to be, but I’m not ready to be tossed out with the rubbish either! The words of a hymn I used to sing sums it up best for me:

I AM NEW CREATION

 I can be changed...
I am a new creation
No more in condemnation
Here in the grace of God I stand
My heart is overflowing
My life just keeps on going
Here in the grace of God I stand
And i will praise you Lord
I will sing of all that you have done
A joy that knows no limit
And lightness in my spirit
Here in the grace of God I stand
"Iam a new creation"
“Iam a new creation”