Caring for carers is crucial

NHS England recently published an End of Year Progress Summary reviewing progress made on 37 commitments made to carers in May 2014. The Commitments to Carers were based on what carers said was important to them. A good start has been made with 32 commitments completed and others continuing to be monitored. But more work needs to be done on the Five Year Forward View commitment to finding new ways to support carers. In the second of a series of blogs, Mandy Rudczenko tells her story about life as carer, its challenges and what NHS England Commitments to Carers means to her:

For the past 15 years I have defined myself as a ‘Carer’, mainly because that role has consumed my life.

In some ways I chose it, in some ways I had no choice in it. My son was diagnosed with Cystic Fibrosis at the age of six months, the day before I was due to return to work from maternity leave.

I made several attempts to return to my job, while juggling hospital appointments. During a work meeting, I looked down at the notes I had been writing, and couldn’t believe what I saw. Dotted amongst the professional notes were the words ‘Guthrie Test’, written several times.

The Guthrie Test is the heel prick blood test which babies have, to identify certain diseases, including Cystic Fibrosis. My son’s test had been a false negative, resulting in six months of me banging on various NHS doors to try and find out what was wrong with him.

I still don’t recall writing those words but my subconscious mind was clearly seeping out. I think I was still hoping they had got it wrong. I resigned the next day.

I’m glad I did, but it took me a long time to come to terms with the loss of my ‘non-carer’ self.

I am very pleased to see that this grieving process is acknowledged in NHS England’s ‘Commitment to Carers’: ‘It takes carers an average of two years to acknowledge their role as a carer’. Another important facet of being a carer acknowledged by this document is the unique situation of each carer.

This is extremely important because, one of the most difficult things to deal with as a carer is the stereotype which society wants to push us into. Questions like: How can you be his carer, he’s not in a wheelchair? How have you got time to go to a creative writing course if you are a carer? A colleague shared a good one recently: You’re not a real carer because you go to work.

Being a carer has given me the satisfaction of knowing I am keeping my son alive, but it has also restricted my career and made me ill. Thankfully, the NHS England Commitment to Carers acknowledges these issues: ‘Caring responsibilities can have an adverse impact on the physical and mental health, education and employment potential of those who care’.

I have tried to go back to work part-time. I’ve had to give up two contracted jobs because my son’s hospital treatment clashed with my rota. I could have taken them to a tribunal but, where would I get the energy from to do that? I now work on a casual basis. When I drive to work I feel like a ‘valid’ member of society, like I belong again. Why do I feel ‘invalid’ as a carer?

On the issue of my health, my son’s daily treatment regime, when he is well, includes: three nebulisers, 41 tablets, two sessions of physiotherapy, four inhalers, and dietary supplements. When he is ill, this regime increases. He also has at least 30 hospital appointments a year. It is relentless. Motivating him to do it day in day out is exhausting. Add on the layer of the emotional effect this has on him. Add on the complex issue of my relationship with him (when am I his Mum?). Do I really need to spell out the impact all of this will have on my health? I have been on and off antidepressants since he was diagnosed. My GP often tells me I am doing a great job, which helps a lot, so why don’t I FEEL that.

If carers went on strike, the health and social care system would collapse. I am very glad to see that the NHS England Commitment to Carers aims to ‘Raise the Profile of Carers’. It talks about Board level members shadowing carers. Come on – walk in my shoes – feel the blisters!

NHS England Commitment to Carers recognises carers as experts, we often know the person we care for inside out, and that expertise should have parity of esteem with the health professionals. When completing forms, I like to put my job as ‘CEO of my son’s care’.

One issue I find difficult as a carer, is the inflexibility of the NHS to fit my son’s healthcare around our lives, including mine. Do I really have to feel guilty about changing my son’s appointment because my other child needs me for something?

NHS England Commitment to Carers addresses this by advocating that ‘carers are integral to the care and support planning process’. Having more open, co-productive discussions about treatment plans would greatly reduce the stress.

The Commitment to Carers consistently mentions engagement with carers, collaboration with carers, summits for carers. This approach of Co-Production with carers is crucial to the future development of the role and well-being of carers in our society.

I am glad to see the NHS is pointing the way towards a better deal for carers.

Mandy Rudczenko’s varied experience includes 15 years working as a mental health nurse, adult education tutor, and tutor trainer.

She has been a carer for her son who has Cystic Fibrosis and Immune Deficiency for 14 years and, as a carer, has become actively involved in:

  • Patient/Public Voice Representative on the Clinical Reference Group for Cystic Fibrosis, since June 2013.
  • Member of the People’s Panel for the Future of Health Conference 2014 – as a Citizen Journalist and Commentator.
  • Member of the Co-Production Group – The Coalition for Collaborative Care, since January 2015.
  • Expert by Experience on the People and Communities Board; one of the ‘Five Year Forward View’ boards, since June 2015.
  • Member of the People’s Panel for Expo 2015.

Mandy is a keen writer since a very early age, her portfolio includes: poetry, plays, published articles about her son’s condition, tweeting, and a blog about Expo.

Mandy passionately believes in the vision of people having more control over managing their own health alongside more collaborative equal relationships between people and health professionals.

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