Giving Lyme Patients a Voice

A visit to the Health Secretary and CEO of NHS England

On 29th February 2016, John Caudwell and Veronica Hughes hand-delivered a selection of thirteen patient case studies to health Secretary Jeremy Hunt and to Simon Stevens, C.E.O. of NHS England. These case studies were selected to demonstrate the serious lack of care available for Lyme disease patients with persisting symptoms in the UK.

Giving Lyme patients a voice

Many thousands of patients in the UK and beyond, who have Lyme disease and co-infections, are struggling immensely and feel forgotten. One of Caudwell LymeCo Charity’s objectives is to give these people a voice.

There is currently no proven cure for patients with persisting Lyme disease symptoms and many patients feel forgotten by their doctors. Some are abandoned by friends and family who are unable to accept that they are crippled by this terrible illness, which some doctors dismiss due to a lack of understanding of its real effects.

We have already published several hundred stories documenting ruined lives and shattered dreams and we will continue to publish these stories to shed some light on the scale of the suffering.

We invite you to submit your own story here.

Comment by Louise Dean of LDUK

Louise Dean and Natasha Metcalf, co-founders of the online patient support group Lyme Disease UK picked out the thirteen case studies from the hundreds of stories submitted.

Afterwards, Louise Commented:

Today’s been hard. We lost an LDUK group member who passed away the other day.

Today I edited down over 200 heart wrenching stories to a ‘shortlist’, which in itself feels like a betrayal to all the people whose input didn’t get included.

Even though I’m familiar with the reality every single day, seeing the unrelenting volume of suffering was deeply upsetting. Person after person losing not only their health, but losing their careers, their education, their partners, their friends, their homes, their hobbies, vocations, freedoms and their dignity. The sadness of people missing their children’s childhoods, or of never being able to have a family. The pressures of looking after ageing parents or sick children while being sick themselves. The pressures of a sole breadwinner supporting multiple people’s private treatments while also being their carers.

The number of people whose existence is now confined to a bed and who have been completely abandoned, who have been dismissed, laughed at, ridiculed and betrayed. People who are desperate to get back to work but continually fail, and people whose hard fought-for businesses being closed. People on cocktails of ‘bandaid’ drugs, but refused basic testing or treatment, even after proof of Lyme. People giving up everything to get treatment abroad. People saying they should be put down or wanting death to come quicker. People saying suicide is the only option left.

These people are invisible to society because they’re not part of society. They don’t leave the house.

I knew a chunk of Lyme patients were in this situation but I don’t think I realised just how many. I guess they’re not well enough to make themselves heard online either.

Most people with Lyme don’t get this bad, but 63% of people to receive early standard treatment go on to have continued symptoms, and of them a chunk are severely affected with an abysmal quality of life. Most people are never treated early, and so have even worse chances.

I’ve been through so many emotions today, not helped by the realisation that I’ve been dropped by yet more doctors who feel out of their depth and powerless to help me.

Physically and mentally I’m so tired of my personal fight with my health, but one of the only things keeping me going is the outrage, and the drive to make a difference.

I’m not even well enough to cook a proper meal but I spend hours a day working on the laptop. I have no intention of being a martyr about it, but I just want to be honest, because this whole thing is so hidden and it needs to be heard.

And maybe if I can find this one thing to keep me going, then maybe others reading this can also find something to keep them going.


Former model and professional sports coach Jessica Bennet was reduced to a wheelchair and left bedbound by Lyme disease


Posted in Blog posts, Charity news.

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