Fiona Liddell, Helpforce Cymru Manager reflects on a workshop which drew upon participants’ own healthcare stories to imagine a better future.
The Bevan Commission conference in July ‘The tipping point – where next for health and care?’ encouraged some deep thinking about the future that we want to see.
Our workshop invited participants to recall and to write down, a significant interaction with the health service which involved themselves or someone close to them. Later they were asked to ‘fast forward’ to the year 2048 and to rethink how that scenario might play out in a better health system in the future.
Some of the themes that emerged may not be surprising, but the details of the stories they shared are powerful. Time and again we heard how small changes would make a significant difference to someone’s experience, health and wellbeing.
The NHS may never be able to provide the holistic and person centred care that we aspire to, but working hand in hand with voluntary and community organisations and with volunteers, we may be able to achieve a more rounded and far reaching level of care than would otherwise be possible.
Here is a selection of stories, (shared anonymously and edited), which illustrate some of the simple changes that matter to people.
HOLISTIC CARE
‘My mother found a breast lump and was brave enough to seek GP advice. Treatment followed (which had terrified her all her life), with positive outcome. She resisted social connection and voluntary sector contact due to her own beliefs.’
In the future – ‘Voluntary sector could be represented within consultation areas, enabling connection to a social and volunteer community. The value of such support would be well understood.’
‘Taking my daughter to A and E – people moving around in a busy environment. I felt swamped. Not a good experience as an autistic parent.’
In the future – ‘Adequate time to plan and to pack eg ear plugs to cut down the noise. A clean and quiet waiting space and some recognition of anxiety triggers that affect me. When I am well I can care better for my child.’
‘A Ukrainian man at our GP surgery was asking for a signed GP note for a bus pass. He was struggling with the language and the wait and was clearly frustrated and upset. The receptionist kept repeating “it’s with the doctor”, told the man he was being aggressive and walked away.’
In the future – ‘A health care “connector” would have time to listen and talk through his concerns in a calm place. There would be no need for a GP to sign the bus pass. Other information about local support would be offered.’
COORDINATION AND COMMUNICATION
‘I made a phone call to arrange a CT scan. The hospital was unaware of my admission to another hospital within the local area.’
In the future – ‘We would have electronic patient records across all Wales.’
‘My daughter had an irregular heartbeat since having COVID-19. She had an ECG [Electrocardiogram] but after months passed the results hadn’t come. We got an appointment to see the paediatrician. Both he and we thought we would be discussing ECG results – but we are still waiting and worrying. She is having panic attacks and is afraid to do physical exercise etc. We paid for EFT tapping (Emotional Freedom Technique) to manage anxiety.’
In the future – ‘Children and families would not be passed between paediatricians and expert clinicians in this way. Wider wellbeing matters would be at the forefront of health staff minds. Information about coping mechanisms and strategies to deal with emotional stress/fear of illness would be readily accessible within education and community settings.’
‘Mum had failing health and memory and increasing anxiety. She underwent multiple tests and assessments with no coordination – everyone trying to support at a distance. Mum cannot keep track and has lost sight of her own story.’
In the future – ‘Care is better coordinated, with voluntary support to get her to places, help her to understand what’s going on and to understand her story.’
PREVENTION AND SELF CARE
‘My 11 year old daughter self-harms and was referred by the GP for assessment. The case is not severe enough for CAMHS (Child and Adolescent Mental Health Service). She was referred to third sector but we are struggling to get help. Alternative, private options are expensive. It seems a never ending cycle of chasing. Meanwhile the self-harming has worsened.’
In the future – ‘There would be better “ownership” of the patient. A digital patient pathway would allow the daughter to track her own symptoms. Appropriate help would be available in a timely manner.’
‘I have type 2 diabetes which I think is well managed. I used to have an annual check-up, but this disappeared during COVID. I have to take responsibility now to ask for testing.’
In the future – ‘Self-care testing would be the norm, with results going straight to the specialist. Voluntary sector involvement to check that I’m testing. Self-care has benefits to me and to the NHS.’
VISION FOR THE FUTURE
The workshop was facilitated by Fran Targett and Mary Cowern – Co-Chairs of Helpforce Cymru with Jo Davies (Head of Health and Social Care, WCVA) and myself.
All the stories collected will be fed into a national conversation on the future of our health services, which is being lead by the Bevan Commission.
We have set out our vision for volunteering in relation to health and social care in a paper: The values and value of volunteering – our hidden asset and are working on a companion paper about the role of the voluntary sector. Watch this space!
ABOUT HELPFORCE CYMRU
Helpforce Cymru is working with Third Sector Support Wales (WCVA and 19 CVCs), Welsh Government and other partners to develop the potential of volunteering to support health and social care services in Wales.
Visit the Helpforce Cymru webpage, or to receive email updates, sign up here and choose the option ‘health and care volunteering’