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The following piece was written for ME Association for Carer’s Week:

I’m often asked “What is the hardest thing about living with Severe ME, and what has been the toughest adjustment you have had to make?” 

It’s not easy picking just one thing – my life turned upside down when my health severely deteriorated a few years ago, and I became bedbound. 

However, for me personally, the hardest thing to admit, and come to terms with, was accepting that I was no longer able to care for myself. It was the loss of independence that came with the realisation that I needed to rely on others. But the care I receive needs to be consistent, and this is something the social care system in England seems unable, or unwilling to provide.

I wish I could be in the position to write a more positive piece about accessing care as someone with severe ME, but my personal experience has been a frustrating and stressful one. It’s quite obvious that the social care system is not designed for people like me – it cannot accommodate the complex needs of those of us living with multiple chronic illnesses. 

My care is provided through an agency. Here are some of the common frustrating problems I regularly face:

  • I’m often sent new carers without warning. This is exhausting as I have to explain my complex care needs again every time, and having severe ME means I often struggle to communicate. Routine and consistency are vital for me. 
  • My regular carers are often replaced on my calls with new carers, with no notice or prior warning. It’s important for me to build a relationship and trust with my carers – this is impossible without consistency of care. This also triggers my anxiety as I never know when a stranger is going to walk into my home. 
  • Calls are often over an hour late or early, and sometimes I’m left waiting up to two hours. I rely on carers to prepare food for me, and I need to eat at consistent times. 
  • Calls are often cancelled at the last minute leaving me without the means to feed myself.
  • Most carers simply do not understand my needs as someone living with severe ME. I try to educate them but this is exhausting, and impossible when my agency insists on sending new carers. 
  • My hypersensitivity means that carers often cause me harm with something as simple as wearing perfume or being noisy. When I explained this to my care agency I was told I was being ‘unreasonable’ to expect carers not to wear perfume. Therefore I often have to turn carers away and go without food. 

Over the years I have tried to address these problems first directly with my care agency, and then with adult social services. I exchanged multiple phone calls and emails over a three-year period – But I achieved nothing. I was ignored and abandoned, and made to feel like a nuisance. The care system is in place to help vulnerable people like myself, yet it has caused me no end of stress.

Image ddescription: Collage of photos of a woman (me) with shaved hair, lying in bed wearing sunglasses and/or ear defenders.

My care workers offer a crucial lifeline 

However critical I am about my care agency and the social care system as a whole, I cannot praise my regular carers enough. They offer a crucial lifeline for me and have become good friends over the years. Sadly these carer workers are underpaid and undervalued, and many are on zero-hours contracts. They provide a vital service and we must do more to protect them. 

If you are at the stage where you believe you need assistance with your care needs, please ask a family member or friend to help guide you through the social care system. It can be a stressful process and having a healthy ally in your corner will help. 

And if you are a care worker reading this, I just want to say thank you for the amazing work you do in such difficult circumstances.

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