LET'S WORK TOGETHER

The journey to recovery after illness can be a lonely one for both the patient and their family. Mum and carer Annette Hurst shares her experience of caring for her grown up daughter Miriam, and how she wishes that health care professionals had listened to her.

My 25 year old daughter caught COVID in March 2022. She found that she couldn’t look after herself, so she came home for a couple of weeks, as we thought, for some TLC. But she didn’t just bounce back. She had contracted Post COVID Syndrome (Long COVID).

Her symptoms were diverse and frightening. Both her physical and mental fatigue were so severe that she couldn’t make herself a cup of tea or hold a conversation involving a decision. ‘What do you want on your sandwich?’ was too difficult for her to answer.

Importantly, she found that interacting with the GP was hard. The complicated email system, which she would have negotiated without a thought before COVID, became a huge barrier for her to access. She was repeatedly asked, ‘What is wrong with you?’ making her feel as if her illness was all in her head.

They weren’t listening to her. And frustratingly, they didn’t listen to me either. As a carer, I was excluded from the process; from even booking an appointment for my own daughter. I felt shut out.

Undeterred, I wrote a letter to the GP practice describing in detail what my daughter was going through. It made a huge difference – the practice understood her difficulties and was able to adapt their systems to her needs. She was allocated a dedicated GP who she could call any time, and easy access to medical admin. They accepted talking to me too – hurray!

We laughed a bit –but we cried too.

We started working together and results improved. The day she made herself and me a cup of tea, three months into her Long COVID, we celebrated with cake! We ordered takeouts and ate them outside as if we were on holiday, we laughed a bit – but we cried a lot too.

She began to relax and she believed she might ‘get her life back.

Anxiety and worry dominated my daughter’s days as she struggled to believe she would ever get better. I persuaded her to listen to a ‘meditation’ CD which harnessed the power of her mind to control her body. She began to relax and she believed she might ‘get her life back’ as she put it.

Nine months later, she started to gradually move back into her flat and do one hour a week back at work. We had mastered the ‘art of slow’ and learned to appreciate minute improvements.

One year later, our daughter was fully recovered, but I know this isn’t the same for everyone. And while I wish a health care professional had listened, respected, and accompanied me on this long journey earlier in the process, I know that the medical profession is now listening and there is a move towards change. My advice is let’s work together.

Involving The Carer

Annette’s feature has been adapted from a piece she wrote for the internationally renowned British Medical Journal (BMJ) which champions better research and clinical practice. Following on from her article, the BMJ now recommends that GPs and others look at better ways of involving or accompanying carers in a patient’s recovery plan, including:

• Involving the carer in the systems and processes of health care early after diagnosis, as this can help relieve the burden of communication and administration on the patient

• Using positive language and encouragement, as this can validate symptoms and help support mental health and wellbeing

Source: BMJ

• Asking the carer what the patient’s life is like and including this narrative in the patient’s notes to help ensure interactions with the patient are appropriate.

Commitment To Carers

According to NHS England 1.4 million people provide 50 or more carer hours a week for a partner, friend or family member.

As an organisation they say that they recognise the significant contribution carers make to society and the NHS. You can find out more about NHS England’s commitment to carers here: england.nhs.uk/commitment-to-carers

Mersey Care offers help, advice, training and support for everyone that performs the role of carer. www.merseycare.nhs.uk/carers

WHAT IS POST COVID SYNDROME (LONG COVID)?

Emerging evidence and patient testimony are showing a growing number of people who contract COVID-19 cannot shake off the effects of the virus months after initially falling ill. Symptoms are wide ranging and fluctuating and can include breathlessness, chronic fatigue, ‘brain fog,’ anxiety and stress.

Source: NHS

WORK TOGETHER