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‘Postcode lottery’ claims over treatment for ME

The following article appeared in the Eastern Daily Press (EDP) on the 26th July 2018. Written by Geraldine Scott.

“Postcode lottery” claims have been made over treatment for myalgic encephalomyelitis (ME) in Norfolk and Suffolk, as one sufferer said variations in care had left her angry and abandoned.

Jo Moss, 43, from Norwich, was diagnosed with ME 12 years ago. She described feeling like she had been “missing behind closed curtains” ever since and said: “Like millions of others I live my life from one darkened room, I rely on carers for even my basic needs and I feel isolated from the outside world.”

But she said the illness had been made worse by not having access to treatment she said would give her “hope for a better future”.

Dr Luis Nacul, director of the CureME research group, presented clinical commissioning groups (CCGs) in Norfolk and Suffolk a proposal in 2016 for a cost-neutral consultant-led service.

The recommendations were accepted by CCGs in Suffolk.

However in Norfolk and Waveney those with ME are offered between six and 10 therapy sessions before being discharged back to their GP.

But Mrs Moss said this left those who were severely affected, and often bed bound, without care.

She said: “How can [the CCGs] justify making a decision that denies severely ill patients treatment that could dramatically improve their quality of life, and reduce their pain and suffering, especially if this treatment was at no extra cost to the service currently provided?”

She said the current system left “no support for the long term ME patient”, and added: “I have been left to cope with this devastating illness on my own. I am virtually bed bound and I suffer debilitating pain and exhaustion on a daily basis, yet I do not receive adequate or consistent care.”

Mrs Moss had already complained to the CCGs, but she said she would also like representatives to visit her at home to “see first-hand the impact severe ME has on [her] life”.

She added: “I don’t think they realise the impact of their decision on ME patients like myself. Access to treatment shouldn’t be a postcode lottery. Having specialist care from Dr Nacul would mean I wouldn’t have to battle this debilitating illness on my own like I have been doing for many years.”

It is estimated that around 250,000 in Britain are affected by ME, and for a large number the impact is life-changing.

A spokesman for the Norfolk and Waveney CCGs said: “A specialist ME/CFS service is in place to support patients, provided by East Coast Community Healthcare.

“It offers an outpatient service via face to face appointments, email, telephone and, in a small number of cases, home visits. The team is made up of GPs with specialist interest and knowledge of ME/CFS and specialist therapists including occupational therapists and physiotherapists.

“There have been ongoing discussions with people living with ME/CFS about the scope of the current service, and the CCGs will continue to ensure the views of people affected by ME/CFS are taken into account.

“NICE, the National Institute for Health and Care Excellence is planning a national consultation about management of ME/CFS. This is also something the Norfolk and Waveney CCGs would need to review and consider collectively in due course.”

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‘Missing behind closed curtains for 12 years’ – Woman describes living with ME

The following article appeared in the Eastern Daily Press (EDP) on the 6th May 2018. Written by Geraldine Scott.

Living from one darkened room, relying on carers for the most basic of needs.

That is the reality of every day life for one Norwich woman who suffers with a condition which is described by some as ‘living death’.

Jo Moss, 43, was diagnosed with myalgic encephalomyelitis – more commonly known as ME – 12 years ago and said it felt like she had been “missing behind closed curtains” ever since.

She said: “Like millions of others I live my life from one darkened room, I rely on carers for even my basic needs and I feel isolated from the outside world.”

It is estimated that around 250,000 in Britain are affected by ME, and for a large number the impact is life-changing.

The most common symptom is extreme tiredness.

Mrs Moss said: “I had been ill for years before being diagnosed with ME. Every GP I visited, begging for help, blamed my poor physical health on depression and anxiety and just prescribed antidepressants or anti anxiety meds – I was even diagnosed with PTSD by one doctor.

“I was finally diagnosed in 2006 by a new GP who had just transferred from the local ME clinic to my doctors surgery. She was great and referred me to the clinic. She was very supportive but sadly, she left soon after.”

Mrs Moss, who worked in finance, said at the clinic she was taught pacing – how to balance activity and rest to help manage ME – and was given a course of cognitive behavioural therapy.

And they also wrote to her employer to explain what ME was.

“I was still mobile at the beginning but my health continued to deteriorate due to a lack of treatment and support,” she said.

“And stress was brought on by having my health benefits removed. I was assessed as 100pc fit to work at a time when I could barely function or care for myself. I had to appeal and go to tribunal, which took 18 months, it was so stressful and exhausting – it broke me. I have been virtually bed bound now for 5 years.”

She said subsequent doctors had not been as supportive.

“I had one doctor tell me ‘your fatigue is caused by over sleeping’ – apparently sleeping too much causes ME. I had another GP tell me ‘if you don’t get out of that bed soon, you are going to die in that bed – sooner rather than later’ – I sobbed for 2 days.”

“Before I became sick I had a very active social life. I’m a rock chick who loves live music, dancing, singing, laughing and drinking with friends. I miss this so much, I even have vivid dreams where I’m singing so loudly I wake up with palpitations. My subconscious mind still craves stimulation even if my physical body cannot tolerate it.”

Now, Mrs Moss has started a blog to reach out to others suffering but she said it was also an opportunity to regain her voice – especially next week, which is ME Awareness Week.

She added: “I have gone years without a voice, hidden away in a darkened room – forgotten, missing.”

A spokesman from the ME Association, said: “ME is real. It’s devastating. It leaves people, at best, struggling to work. At worst, it leaves them enduring a tortuous existence, a living death, where they are unable to take their place in society. The ME Association campaigns to make the UK a better place for people with ME.

“People are taking their lives because they cannot bear the torture this illness brings. This is a completely unacceptable situation for a disease costing the UK economy around £3.5billion in lost taxes, healthcare and benefit costs.

“There is no cure – and the longer it will take to find one unless funding dramatically increases.”

• To read Mrs Moss’ blog, visit www.ajourneythroughthefog.co.uk

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Inside the isolation caused by ME/CFS hypersensitivity.

I find hypersensitivity one of the hardest ME/CFS symptoms to cope with as it can be so isolating. Hypersensitivity comes in many forms: hypersensitivity to light, touch, noise, smells, vibrations, foods, medication, chemicals, heat, cold and irritants like pollen and dust. All of these things can cause pain, nausea, fatigue, headaches and migraines. The slightest stimulus heightens our senses and causes palpitations, sweats, tinnitus, dizziness, chest pains and difficulty breathing.

The only way to avoid this pain, and the scary symptoms that accompany hypersensitivity, is to avoid contact with the stimulus that causes the harm – this is the isolating part. I have no option but to live in a darkened room. I have to avoid noise, strong smells and touch from loved ones. My sense of smell is so acute at times, I can smell a bar a chocolate from the other side of the room – not the best superpower but it’s quite impressive. My diet is so restricted and I am unable to take most prescription medication which may be able to relieve some of my discomfort. Loud noises like fireworks are unbearable and traumatic.

But the world is a busy, smelly, noisy place. If I have to leave the protective cocoon of my room for hospital appointments, I am met with an onslaught on my senses – a sensory overload. It feels like a million people are shouting at me from all directions. It’s not just painful and exhausting – it’s terrifying. My heart races and I feel like I’m going to collapse – I want to run and hide but I freeze on the spot, terrified. The pressure builds up in my head, I feel like it’s going to explode. It’s frustrating because people don’t understand the damage their actions can cause, and quite how traumatic it can be.

Imagine a life spent avoiding human contact because you are too scared of the consequences. Imagine a life where the softest touch from your partner causes you to flinch with pain. Imagine a life where your care workers perfume makes you so ill you are unable to function for hours. Imagine a life where you fear sunlight and spend your days hiding in a room darkened by black out blinds (I used to read books about vampires all the time – now I have become one). Imagine a life where you have to wear earplugs even in the most quiet environments. Imagine a life where you can’t watch TV or listen to your favourite music because it’s too painful and exhausting. Imagine how isolating this life is – it’s very easy to feel alone and forgotten.

I have always been a very sociable person. I used to thrive in busy environments and I loved being surrounded by large groups of friends. I was always the life and soul of the party, but now this scenario feels me with sheer panic. I miss human interaction. I miss being surrounded by friends, I miss being carefree.

So the next time you visit a friend who suffers from ME/CFS, please consider what you are bringing into their environment. If possible, don’t wear perfume – even your washing powder could cause your friend harm. Lower your speaking tone down a couple of notches. They may be too sensitive to give you a hug or to tolerate any physical contact, so please ask first. Be prepared to sit in the dark while you chat. And please, no sudden movements – these can set of the same symptoms. But most importantly, please do NOT avoid visiting or speaking to your friend just because you are afraid you will cause them harm. We still crave human interaction and your visit could give them the mental lift they need to fight another day. A few adjustments in your behaviour can make a big difference.

When my best friend comes to visit me she always leaves saying; “I feel so bad, I know I have exhausted you”. Yes, it will take me days to recover from her visit but the memory of her smiles, stories and kind comments will last much longer. Feeling “normal” even just for a few minutes is often worth the payback. Human interaction is vital for our mental wellbeing and it helps us to feel less isolated and alone.

If you are someone that regularly visits a friend suffering with ME/CFS – thank you, your presence will mean much more than you will ever know. Take care.

I know hypersensitivity and sensory overload are symptoms of other medical conditions too. Does anyone else experience hypersensitivity? If so, what form does it take? What coping strategies do you have?

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Newspaper article highlighting inequalities of care for ME patients

 

I’m in my local paper this week (EDP), this time highlighting the lack of services for ME patients and inequalities of care.

I’m sure you are all aware how angry I am about Norfolk CCGs decision to reject an offer from internationally respected ME specialist, Dr Luis Nacul, to provide a biomedical consultant led care service in the Norfolk area for moderate and severe ME patients; Even though, a feasibility study carried out, determined that Dr Nacul’s service improvement was ‘cost neutral’.

I have sent a letter of complaint to Norwich CCG and contacted my local MP, but I also approached my local paper. I’m really pleased they are helping me highlight this issue.

If you live in Norfolk and would like to help me make a stand I have written a post about how to complain to your Norfolk CCG including a template letter.

Please click on the following link to read the article:

http://www.edp24.co.uk//news/health/postcode-lottery-me-1-5625734

 

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WEGO Health Awards – vote now

I have been nominated for the WEGO Health Awards!

I’m honoured to say I have been nominated for the Wego Health Awards in the ‘Best in show: blog’ category. These awards seek to recognise Patient Leaders who are making an impact with their advocacy. I have no idea who nominated me, but thank you!

Can I ask a favour please? Could you click on the link and vote for me please. It’s really easy to do; just scroll down to ‘endorse Jo – A Journey Through the Fog’ (under my photo). Thank you.

https://awards.wegohealth.com/nominees/14246

The WEGO Health Awards were created to celebrate those patients who actively support the mission of WEGO Health: to empower the patient voice.

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11 Strategies to Combat Negative thoughts and Emotions.

 

This is a post I wrote especially for ProHealth’s Inspirational Corner and it first appeared there on the 3rd July 2018.

“Self compassion is simply giving the same kindness to ourselves that we would give to others”

We often talk about the physical symptoms we have to deal with when living with a chronic illness but we often shy away from discussing the negative, raw emotions that surface too. Anger, resentment, frustration, grief for your past life, self pity and desperation, are all emotions we face on a daily basis. But the hardest emotion I find is guilt. Guilt for having to constantly ask for help even when my husband is exhausted from working long hours, guilt for having to cancel plans at the last minute when I’m not well enough, guilt for not being strong enough to emotionally support my loved ones, guilt for not being able to cook for my husband, guilt for being emotionally needy, guilt for not having a smile on my face when I’m in pain, guilt for not being the life and soul of the party, guilt for all the things my husband is missing out on, guilt that I can’t be the woman he married. That’s a whole lot of guilt for one person to be carrying around.

I have always enjoyed looking after my husband, I know it might sound old fashioned but I always felt pride in cooking for him and keeping a nice house. I have always been in charge of the household finances and been emotionally strong and independent. Don’t get me wrong, I’m not the sort of person who spends hours each day cleaning and I’ve always had a full life, but I took pride in these things.

But that all changed 5 years ago when I became virtually bed bound due to severe ME/CFS and fibromyalgia. My physical and mental health had been deteriorating for years but rather than accept my limitations and rest, I did what many of us do and tried to push through. I hoped by ignoring the signs and fighting on, I could somehow beat the illness. I fought for years before I finally admitted I wasn’t coping and needed help.

So, the tables turned. Not only could I not look after my husband anymore, I couldn’t even look after myself. I couldn’t clean, I couldn’t be an emotional support for my husband, family and friends. I needed help with personal hygiene, I couldn’t even shower myself without my husband’s help. I hated having to ask for help. This was a huge shift for me and a big change like this brings a multitude of negative emotions – I often feel inadequate, selfish, a failure, pathetic and full of guilt.

Fortunately I’ve discovered lots of tools to challenge these difficult thoughts and emotions, they’re still a work in progress but I really want to share:

11 strategies for combating these negative thoughts and emotions.

1. Self compassion.

The biggest and most important strategy I’ve discovered is learning how to show myself compassion. Having compassion for oneself is really no different than having compassion for others. To have compassion for others you must notice that they are suffering. Having compassion also means that you offer understanding and kindness to others when they fail or make mistakes, rather than judging them harshly. And when you feel compassion for another, it means that you realise that suffering, failure, and imperfection is part of the shared human experience. We need to find a way to show ourselves the same compassion we show offers.

2. Prioritise your health and happiness.

It’s easy to get down on yourself and feel like you aren’t worthy of being the number one focus of your own life, but sometimes, you’ve just got to devote some time to your own needs, hobbies, and enjoyment. It helps you feel balanced and appreciated in the rest of your life, which can only be a good thing. I’ve spent so much time apologising and feeling bad about asking for help that I’ve often forgotten about my own needs and feelings. I also often forget that I didn’t ask for this either, it’s not my fault I’m ill.

3. Communication.

I hide a lot from my loved ones because I don’t want to worry or burden them, but this is often counterproductive. By bottling up our emotions they grow and become much bigger problems – we give them power by shutting them away. I’ve found that communication makes a huge difference. Talk to your loved ones about how you are feeling, they may be feeling negative emotions too, they may feel they don’t do enough, or feel frustrated that they can’t take away your pain. Talk to your support network, whether that’s friends online or in real life, about how you are feeling, we are often so self critical, a bit of perspective can achieve a lot.

4. What would a friend tell you?

One tip that has really helped me is asking myself what a friend would say. We spend so much of our lives talking negatively to ourselves. If a friend was experiencing these same problems and negative emotions, what would you say? Write a letter to yourself, but imagine you’re writing it to a friend. What would you tell them about what they’re doing? Would you say they weren’t good enough or that they’re not worthy? No, you wouldn’t. Chances are you would be supportive, encouraging and positive.

5. Positive affirmations.

When I pay attention to how much strength it takes just to survive, and I focus on how far I have come and what I’ve achieved, I find it easier to let go of my negativity.

You need to realise you are worthy, you are a good person and you have a lot to offer despite your poor health. On a day when you feel emotionally stronger, spend a few minutes writing a list of your strengths. If you don’t feel able to do this, ask a friend to do it for you.

Spend a few moments each day reading this list and thinking about what makes you unique, what you bring to your relationships, what makes you a good person and what makes you worthy of love and compassion.

6. Do things that make you happy.

When you live with a chronic illness the limited energy you have is normally used up carrying our practical tasks like washing, cleaning etc. We feel we ‘should’ prioritise what we perceive to be essential chores but this often does not leave us with the energy to do the things we enjoy. Having fun, smiling, laughing, spending time with friends and relaxing are essential for our wellbeing.

7. Rest and restore.

These negative emotions often arise when we are physically exhausted – fatigue makes everything harder to deal with. Concentrate on being kind to yourself – rest and find ways to heal yourself.

8. Acknowledge your life is tough.

I try my best to remain positive but sometimes life throws too much at me and I become overwhelmed and exhausted. It’s at times like this that guilt sets in – I feel weak, I feel like a failure, I feel like a burden. My emotions take over and my mental health deteriorates. But the truth is – I’m not weak and neither are you – we just have a lot to deal with.

9. Focus on your abilities, not your disabilities.

To alleviate the frustration that often accompanies a chronic illness I try to concentrate on what I can do rather than what I can’t do. Acknowledging my abilities rather than focusing on my disabilities has been very liberating and is an excellent tool for enhancing well being and self worth. It also helps to reduce negative emotions.

10. Acknowledge your feelings are valid.

Although these negative thoughts and emotions are exhausting and often represent a warped perception of reality, we need to acknowledge they are valid. It’s completely understandable, given the challenges of poor health, that you experience these frustrations. Please don’t beat yourself up about feeling this way.

It’s perfectly natural to spend time grieving the life you have lost, it’s a vital part of the healing process. We often forget the importance of acknowledging grief and when we don’t give ourselves this time to mourn, anger and guilt can take over.

11. Remove self blame.

This is a big one for me! It’s not our fault we are ill and it’s not our fault we need to ask for help! The limitations our poor health places on our lives need to be acknowledged. We need to accept them and encourage those around us to accept them too. Let’s commit to stop blaming ourselves for what is out of our control.

When these negatives emotions rear their ugly heads, the best thing we can do is cut ourselves some slack. Be kind to yourself – show yourself some compassion. Rather than beat yourself up, try to rest and find ways to heal yourself. By focusing your energy on self love and compassion you bring a calmer, more centred person into your relationships.

But please don’t forget; It’s ok to feel overwhelmed, it’s ok to feel sad or depressed, it’s ok to feel angry about your situation, it’s ok to cry, it’s ok to ask for help, it’s ok to admit you are not coping, it’s ok to have bad days – you are only human. Take care.

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How to submit a complaint to your local Norfolk CCG

In this post I will explain how to complain to your Norfolk CCG about their decision not to commission specialist services for ME patients. I have included the contact details for all Norfolk CCGs and a copy of the letter of complaint I have sent. I am happy for anyone to use my letter as a template; just copy, paste and make the necessary edits. I have highlighted the areas that require edits using brackets.

You don’t need to be an ME patient to submit a complaint; carers, family and friends of ME patients can also get involved.

I have detailed the reasons why I’m submitting a complaint, and why I urge you to do the same, in this post (Please take a moment to read this post)

  • You can submit a complaint via your local CCGs website under the ‘complaints/compliments’ section or you can post your complaint to address shown below (see Norfolk CCGs contact details section)
  • You can either write your own complaint letter or use mine as a template.

 

COPY OF MY LETTER OF COMPLAINT:

[To: Tracy Williams (Chair)]

NHS South Norfolk Clinical Commissioning Group, Lakeside 400, Old Chapel Way, Broadland Business Park, Thorpe St Andrew, Norwich, NR7 0WG.

[Date]
Complaint Re: ME CFS Services in Norfolk.

Dear [Tracy Williams.]

I am writing to you to register a complaint regarding:

1. [Norwich] CCG’s decision not to commission a biomedical consultant led service from Dr Luis Nacul (respected ME specialist) for moderate and severe ME patients living in Norfolk.

2. The lack of services available for moderate and severe ME patients in the Norfolk area.

I have recently discovered that all the Norfolk CCGs had an opportunity to commission care from Dr Luis Nacul (an internationally respected ME specialist) but they rejected this offer. Norfolk CCGs decided they would not pay for the new service with the consultant, and one CCG also said there was a “conflict of Interest” when Dr Nacul offered his services for a “cost neutral solution”. All Norfolk CCGs have consigned ME to a “minor community service” and it will not be allowed to be discussed in public nor are minutes released from their clinical exec.

What makes this decision even worse is that in his feasibility assessment Dr Nacul determined that service improvement was cost neutral. https://t.co/j2EGXPdb7Q

How can [Norwich] CCG justify making a decision that denies severely ill patients treatment that could dramatically improve their quality of life, and reduce their pain and suffering, especially if this treatment was at no extra cost to the service currently provided?

[As a severe ME sufferer who has lived in Norfolk for 35 years, I am deeply saddened and angered by this decision. I have felt abandoned over the years by the NHS due to lack of specialist care, lack of provisions for severely affected ME patients and inadequate knowledge and understanding about ME by medical professionals within the NHS; I have been left to cope with this devastating illness on my own. I am virtually bed bound and I suffer debilitating pain and exhaustion on a daily basis, yet I do not receive adequate or consistent care.]

For years we, ME patients, have been told that a significant barrier to improving care was the lack of specialist expertise. Dr Nacul delivers this expertise in spades but his services have not taken up by Norfolk CCGs – can you please explain why? Also, why has ME been consigned to a “minor community service” – I can assure you, these services are not minor to the thousands who are affected by ME.

As you are aware, Dr Nacul leads the CureME Team at the London School of Hygiene and Tropical Medicine. The team is driving research for the recognition, diagnosis and treatment of ME and CFS.  Dr Nacul and his team are experienced, compassionate and committed to research into ME and CFS. The CureME team runs the ME/CFS Biobank which has included the collection of samples and clinical data from patients, including the severely affected, across Suffolk and Norfolk. We need Dr Nacul and his team’s expertise, our lives depend on it.

The current therapy led service provided by ECCH provides no support for the long term ME patient, or indeed the severe/housebound ME patient. This leaves large numbers of us, possibly several thousand, in the Norfolk and Suffolk area in a state of neglect. I want to know what steps are currently being taken to remedy this situation. It was also recognised by the JHSC back in 2009 that the therapy led service was inadequate and did not provide ME patients with the parity of care offered
to patients of other neurological conditions such as Multiple Sclerosis and Parkinson’s. When is this going to be remedied?

It is over 10 years since the service development process began and it has been clearly established what patients want from their local service.  Significant inequalities of care remain. The inadequacies of service provision in Norfolk and Suffolk need to be addressed.

I look forward to hearing from you.

Yours sincerely

[Name]

[Address]

[Email]

 

  • Once you have completed your complaint letter please send a copy to your local CCG using the contact details below.

NORFOLK CCGs CONTACT DETAILS:

Norwich CCG:

Chair: Tracy Williams

NHS South Norfolk Clinical Commissioning Group, Lakeside 400, Old Chapel Way, Broadland Business Park, Thorpe St Andrew, Norwich, NR7 0WG.

All Norfolk CCG complaints are dealt with at a central office, so the address is the same for all four.

Or email: https://www.norwichccg.nhs.uk/your-health/complaints-concerns

West Norfolk CCG:

Chair: Dr Paul Williams

NHS South Norfolk Clinical Commissioning Group, Lakeside 400, Old Chapel Way, Broadland Business Park, Thorpe St Andrew, Norwich, NR7 0WG.

Or email: http://www.westnorfolkccg.nhs.uk/contact-us/complaints

North Norfolk CCG:

Chair: Dr Anoop Dhesi

NHS South Norfolk Clinical Commissioning Group, Lakeside 400, Old Chapel Way, Broadland Business Park, Thorpe St Andrew, Norwich, NR7 0WG.

Or email: http://www.northnorfolkccg.nhs.uk/comments-compliments-and-complaints-0

South Norfolk CCG:

Chair: Dr Hilary Byrne

NHS South Norfolk Clinical Commissioning Group, Lakeside 400, Old Chapel Way, Broadland Business Park, Thorpe St Andrew, Norwich, NR7 0WG.

Or email: http://www.southnorfolkccg.nhs.uk/contact-us/compliments-comments-concerns-and-complaints

Great Yarmouth & Waverney CCG 

Email: http://www.greatyarmouthandwaveneyccg.nhs.uk/page.asp?fldArea=4&fldMenu=1&fldSubMenu=2&fldKey=449

  • Please copy in to Norfolk Scrutiny officers as well (email complaints)maureen.orr@norfolk.gov.uk   

    timothy.shaw@norfolk.gov.uk

  • You can also use Twitter to voice your complaint. I have been Tweeting my local CCG about this decision but I haven’t received a response yet. Please feel free to put pressure on them. I have been tweeting this:

“@NorwichCCG I’m a severe ME patient living in Norwich. I’m bed bound and suffer daily with debilitating pain and exhaustion. Can you please tell me why you declined the opportunity to commission care from Dr Luis Nacul that could have greatly improved my quality of living?”

“And can you please tell me why you have consigned ME to a “minor community service” and will not allow it to be discussed in public nor allow the minutes released from your clinical exec. @NorwichCCG #pwME #myalgice #ChronicIllness #MyalgicEncephalomyelitis #mecfs”

Don’t forget to to tag your local CCG:

@NorwichCCG @SouthNorfolkCCG @WestNorfolkCCG @NorthNorfolkCCG

CONSIDER CONTACTING YOUR LOCAL MP.

I have also written to my local MP, Chloe Smith (Norwich) and my local paper (Eastern Daily Press) If you feel able to, please consider doing the same.

THANK YOU.

We need to show Norfolk CCGs that this decision is not acceptable, and that the current services available for ME patients in Norfolk is inadequate. Thank you for reading this and I hope you can find the energy to get involved. I understand how exhausting activities like this are, but we need to make our voices heard. Thank you.

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Norfolk CCGs reject an offer to provide specialist ME services

Please help me make a stand.

As some of you may be aware, Dr Luis Nacul, a well respected ME specialist, will be providing limited care for moderate & severe ME patients in Suffolk. This is great news, thank you Suffolk CCG (Clinical Commissioning Group) for taking ME seriously.

BUT Unfortunately all the Norfolk CCGs had an opportunity to commission care from Dr Nacul but they rejected his offer. The Norfolk CCGs decided they would not pay for the new service with consultant, and one CCG also said there was a “conflict of Interest” when Dr Nacul offered his services for a “cost neutral solution”. The Norfolk CCGs have consigned ME to a “minor community service” and will not allow it to be discussed in public nor allow the minutes to be released from their clinical exec.

For years patients were told that a significant barrier to improving care was the lack of specialist expertise. Dr Nacul delivers this expertise in spades but his services have not been taken up by Norfolk CCGs.

https://nandsme.blogspot.com/2018/07/dr-luis-nacul-internationally-respected.html?m=1

What makes this decision even worse is that in his feasibility assessment Dr Nacul determined that service improvement was cost neutral. https://t.co/j2EGXPdb7Q

Service from the current provider, East Coast Community Healthcare, is inadequate and lacking clinical expertise and ongoing care. In 2009 the PCTs (Primary Care Trust) promised to remedy the deficiency in service. This promise was reiterated in 2013 by the CCGs https://t.co/jyAu4AwBvx Inequalities of care for ME patients have been recognised by the NHS but not addressed.

It is over 10 years since the service development process began and it has been clearly established what patients want from their local service. Significant inequalities of care remain. The inadequacies of service provision in Norfolk and Suffolk need to be addressed.

I am frustrated and angered by the Norfolk CCGs decision and have decided to submit a formal complaint, and I urge you to do the same. We need to make a stand and together we can make a difference.

I have compiled an easy to follow guide about how to submit a complaint to your local Norfolk CCG, including a letter template which you can copy, paste and edit. You don’t need to be an ME patient to submit a complaint; carers, family and friends of ME patients can also get involved.

I have also written to my local paper (Eastern Daily Press) and my local Norwich MP (Chloe Smith) but I’m yet to receive a response. If you are as angered by this decision as I am, please help me make a stand; we have strength in numbers. Thank you.

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40 things I wish I could tell my younger self.

One of the main reasons I started writing my blog was to reach out and help others.  When I write my posts I pretend I am speaking to my younger self; whether that’s the anxious child fearful of the world around her, or the depressed teenager desperate to fit in and be liked, or the broken adult suicidal from pain. This post is a collection of thoughts and realities that I wish I had known when I was younger, and some I am still trying hard to grasp as an adult.

1. Don’t be ashamed of your story and who you are. Don’t waste your time hiding the real you and trying your best to fit in. Embrace you quirks and flaws – they are what make you unique.

2. It’s ok to admit you are not coping – it is not a sign of weakness. It’s ok to cry, it’s ok to ask for help, it’s ok to admit you are not coping, it’s ok to have bad days – you are only human.

3. Failure is not a negative thing – it teaches us so much. I was a high achiever at school – I don’t remember failing any exams, but the longer I didn’t fail, the more fearful I became of failing, so much so that it prevented me from trying new things as I was scared that I wouldn’t be any good.

4. It’s ok not to be good at everything. It’s ok to do something just because you enjoy it, not because you are good at it.

5. Perfection is not real. No one is perfect. Pushing to achieve perfection just leads to frustration and feelings of inadequacy.

6. Anxiety and depression are ‘Real’ medical conditions and you are not alone in how you feel. My teenage years were a scary time, I had no idea what my feelings meant – I thought I was a weirdo and alone in how I felt. I wish I could hug her and tell her it isn’t her fault too.

7. Self compassion is so important. You are worthy of love and compassion. “Treat yourself as you would treat a good friend”. We all makes mistakes – forgive yourself and move on. I still really struggling with this one but I’m starting to learn how to show myself the same compassion I show others.

8. It’s ok to say no sometimes, and it’s vital to set boundaries.

9. Stop comparing yourself to other people. You are unique, celebrate your uniqueness. No one has it all figured out.

10. It’s not self indulgent to spend time congratulating yourself on your achievements. Pause and enjoy the moment before racing on to your next task or goal.

11. Celebrate your abilities, not your disabilities. Rather than criticising yourself for what you can’t do or who you are not, concentrate on what you can do and who you are.

12. Accepting your current situation does not mean you are giving up. Acceptance is liberating and vital for your well being.

13. You are not superwoman. Cut yourself some slack.

14. Don’t take yourself so seriously – it’s ok (and healthy) to laugh at yourself sometimes. I have always been quite serious and taken myself too seriously. This inability to laugh at myself has made me more susceptible to being hurt by others.

15. There are practical ways to manage your anxiety. I wish I could take my younger self aside and walk her through some strategies for coping with anxiety, like mindfulness. It’s taken me years to acquire these skills but for so long I struggled alone.

16. Grieving is an important part of the healing process. I wish I could tell my younger self how important it is to talk about and remember loved ones, no matter how painful it is. It’s part of the grieving process and memories are precious – celebrating their lives helps us heal. We often forget the importance of acknowledging grief and when we don’t give ourselves this time to mourn, anger and guilt can take over.

17. Your feelings are, and will always be, valid.

18. You don’t have to wear your pain like a badge of honour. I fought against taking painkillers and antidepressants for a long time because I saw it as a sign of weakness – I felt I needed to prove how tough I was.

19. Physical appearance has no bearing on happiness. Weight has no bearing on happiness – your self worth is not determined by a number on the scales. Everyone has a part of their physical appearance they don’t like – even the beautiful people.

20. Success is not measured by monetary wealth and possessions. Success is measured by health, happiness, love, balance, family and friends.

21. Things can change in a heartbeat – for good or bad. If you are going through a tough time, know it won’t last forever, and if things are good, make the most of every minute. But change isn’t something to be feared – embrace it.

22. Being popular isn’t the be-all-and-end-all. Having a few close and loyal friends is more important.

23. There are ways to cope with negative emotions without beating yourself up further. Anger, resentment, frustration, grief, self pity, guilt and desperation, are all emotions I have faced throughout my life. Self compassion, forgiveness, removing self blame and finding time to pause, reflect, rest and restore – I wish I had known about these when I was younger.

24. Take care of your body and mind – you are not invincible.  I have abused my body and mind far too much over the years. When I was younger I felt invincible and this was often reflected in my actions.

25. Nothing is as bad as it first seems. Take a step back; pause, reflect, rest and relax.

26. Rest, relaxation and reflection are vital for your mental and physical health. I have always (before becoming ill) lived life at 100mph not allowing myself to rest, mainly through fear of allowing my dark thoughts time to surface, but also because I wrongly thought by resting I was being lazy.

27. It’s important to be yourself – it’s the only way to be truly happy. Pretending to be someone else is admitting you are somehow ashamed of the real you. You don’t have to constantly try and prove yourself to others.

28. It’s ok to be a geek. Learning is cool, books are cool (although by saying cool I’m probably acting uncool and showing my age) You don’t have to hide your love of these things to try to fit in.

29. Everyone you meet has something to teach you. Everyone has their own unique story. Take a moment to pause and listen.

30. Choose your battles. You don’t always need to be right – sometimes it’s best to let it drop and move on. Preserve your energy for more important things.

31. When someone compliments you; believe it, smile and say thank you – you are worthy.

32. You can’t control everything. Trying to control what is out of your control just leads to frustration and anger.

33. Find time to do what makes you happy. There’s a bit if a theme going on here. Have I made my point?; happiness is vital. You deserve happiness – right now.

34. It’s ok to spend time doing fun things There doesn’t always have to be a reason, purpose or goal for everything you do in life. You don’t always have to be ‘getting things done’.

35. It’s ok to show your weaknesses. It’s ok to let your guard down and ask for help- you don’t have to be strong all the time.

36. You can’t help everyone and not everyone wants your help. If I see someone is hurting, then I want to help heal them. But the truth is; I can’t help everyone, not everyone wants to be ‘saved’, and some people are not deserving of my love and energy.

37. Mental health is just as important as physical health – don’t let anyone convince you otherwise.

38. Suffering from a mental illness does not make you a bad person. Neither is it a sign of weakness or something to be ashamed of.

39. Try to leave the past in the past. No matter how much you worry about past mistakes, you cannot change them.

40. You can’t please everyone, all the time. There is always going to be someone who disapproves or disagrees with what you are doing. But that’s ok – you don’t need their approval or validation, just be true to yourself. And it’s ok if someone doesn’t like you – It’s not a reflection of your character or self worth, and it doesn’t mean you are a bad person. Do what makes you happy.

Writing this list has been a real eye opener for me and has made me question a lot about how I perceive myself, and the enormous amount of pressure I have put on myself over the years.

Where did I get this notion that I had to be tough and strong all the time? When did I first start believing that I had to take on the world to prove I was brave? When did I stop asking for help because I saw it as a sign of weakness? When did I decide everything I did in life needed a purpose and a goal – doing something just because it’s fun seemed frivolous and wasteful? When did my self worth become intertwined with my weight and physical appearance? – Did society teach me this? We are all the product of our genes and our environment – but how much of this negative perception of myself has been taught, and how much is due to the mental and physical illnesses I inherited? I hope by writing these thoughts of encouragement down I can cut myself some slack and give myself time to heal.

What words of encouragement would you give to your younger self?

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A Girl Behind Dark Glasses (Book) – A Review From a Fellow ME Sufferer.

Images courtesy of Jessica Taylor-Bearman

“I was an inventor, a researcher, a model, and I travelled the world through my imagination. At that time, it was my only saving grace. I existed in a place I called Limbo Land, hovering between the conscious and the unconscious. I could hear my family talking to me, see images of them, yet I couldn’t reply or make sense of what they talked about.” – Jessica Taylor-Bearman 

I have just finished reading ‘A Girl Behind Dark Glasses’ and I was so impressed I decided to write a review. A Girl Behind Dark Glasses is written by Jessica Taylor-Bearman and it’s an account of her life and struggles with a severe form of Myalgic Encephalomyelitis (ME).

For those of you that haven’t heard of Jessica; she is a courageous young woman who featured in Jennifer Brea’s powerful film Unrest. Jessica became acutely ill with ME at 15 years old, prior to this she had been a normal, active, energetic teenager. She spent many years in and out of hospital and spent a long time paralysed in a locked-in syndrome state, bedridden, unable to move, speak or eat.

She began to write in her mind, and when finally able to speak again, she began to write through her audio diary ‘Bug’.

“I loved the concept of creating lives and being able to tell precious stories, allowing others into my imagination so that my stories could become special to them too, simply by the words that I used. It is somewhat magical, don’t you think?” – Jessica Taylor-Bearman 

My thoughts about the book:

It’s very hard not to get angry as Jessica retells how she was treated by so-called ME specialists and by medical professionals in general. I know from personal experience how painful light and noise are, I know the agony caused by the simplest physical activity, I know the exhaustion caused by mental exertion and the frustration of not being believed. I can only imagine the damage caused by the inadequate and harmful treatments she was forced to endure, and how scary it must have been to lose her voice and her ability to defend herself.

But Jessica was failed on so many levels, not just in the treatment she received. The people trusted with her care failed to protect her and keep her safe from harm. There are some heartbreaking moments that had me in floods of tears; tears of sadness and tears of anger. She was mistreated, neglected and abused when she was at her most vulnerable – how could this be allowed to happen?

“Vulnerable I may be but I was born a fighter, and this will only temporarily break me , I told myself firmly.” – Jessica Taylor-Bearman 

 

A Girl Behind Dark Glasses is NOT a sterile account of one person’s struggles living with ME – it’s far more than that. Jessica is an extremely talented storyteller and her style of writing was a pleasure to read. But don’t get me wrong, the ordeals she has suffered and documented don’t make for an easy read, and her words often brought me to tears because I could feel her pain like it was my own. Like any great writer Jessica draws you in with her imaginative narrative and keeps you engaged with every page – I found myself lost in her world. I am amazed by her strength; Jessica never gave up fighting, she never gave up hope and she never lost herself or her sense of humour.

I have followed Jessica’s story for quite some time now and her unwavering positivity, her sheer passion for life and utter fearlessness no matter what life throws at her, are infectious. Her personality jumps out from every page.

I would love to say Jessica’s story is unique but unfortunately it’s far more common than people realise. Medical professionals don’t understand this debilitating illness and many still refuse to believe it exits. We are frequently told it’s ‘all in our heads’ or given so-called therapies like graded exercise therapy (GET) and cognitive behavioural therapy (CBT) which are not just ineffective; they can be extremely dangerous and damaging. For this reason, A Girl Behind Dark Glasses is a vital narrative in raising awareness of ME. Please don’t underestimate the importance of this book: It is crucial that the neglect and the damage caused by outdated and harmful treatments, like GET are documented. One of the main symptom of ME is post-exertional malaise (PEM) which is characterised by a worsening of symptoms following activity. Exercise harms us!, it causes us pain and a severe deterioration in our health. You wouldn’t prescribe sugar for a patient with diabetes so why is exercise prescribed for ME patients? These kinds of treatment still go on today and many people with ME continue to suffer under the care of incompetent, uneducated and unsympathetic medical professionals.

I urge everyone to read “A Girl Behind Dark Glasses”, it’s not just a story about one person’s struggle with the ‘ME monster’ – it’s far more than that. It’s a story of love, family, friends; of hope, strength and courage.

I am in awe of Jessica’s determination and her enthusiasm for life. Although she has battled through unimaginable traumas, her story still remains a positive one, and her compassion towards others is remarkable. I am humbled by her courage and I look forward to following her story as she continues to progress in her journey through life. Jessica Taylor-Bearman is a name to watch in the literary world – I wait with excited anticipation for her next book.

Jessica’s aim has always been to raise awareness of this debilitating condition. Please help her achieve this by buying her book and spreading the word. Thanks for reading. Take care x

How to buy the book.

A Girl Behind Dark Glasses is available direct from Jessica’s website. There are a few options: Limited edition (signed) hardback, paperback and eBook (currently half price). Please click here for more information. 

You can also purchase the book from Amazon or from Book Depository where they are offering free worldwide delivery, please click here for more information.

For more personal stories, reviews, news, inspirational quotes and in-depth discussion, please head over to my Facebook page.