Blog 1
Raising awareness of the unpaid, unselfish work unpaid family carers do.
I wondered if this group was genuinely interested in involving carers in its research. I knew Tilly Hale from Liver North, a brilliant organisation where we had talks with leading consultants and I felt valued and learned a lot.
The Tilly Hale Carer research group inspires me in my own research to raise awareness of the unpaid, unselfish work unpaid family carers do. The involvement of NIHR as funders adds strength for me that the group is genuine. The group helps me to meet others like me, albeit with different reasons for caring. I feel a little less isolated and my voice is heard with this group. In hospitals, carers need a stronger sense of inclusion in decision making and being involved in the triangulation of care as they have knowledge of the patient (and possibly power of attorney).
I was a senior nurse in the NHS in Scotland and left to support a loved one. He was a brilliant academic but also an alcoholic. I have had a roller coaster journey navigating basic care at the point of need and all the horrors of alcoholism in the family. I genuinely thought he would die of injury through intoxication, or refusal of treatment from all services. I feel the patient is often consulted without the family or carer present, so the patient is often not giving informed consent.
Following my work and being part of the Tilly Hale Carer Research Panel, I am preparing a poster for a Glasgow dementia conference in May to raise awareness of the vital work carers do.
Public Contributor: Anonymous
Blog 2
Speaking openly and publicly about my experience brings some relief, knowing that health professionals and researchers want to hear the “good, the bad and the ugly” about failures of health care in the UK, is refreshing.
Hello, my name is Roy Fussey, and I’d like to share my and my wife Elizabeth’s story with you today. During the summer of 2003, Elizabeth, a long-time mental health Nurse went into work and suffered a serious assault from a sectioned patient. This assault has led to Elizabeth developing complex physical and mental health problems.
Since the assault, Elizabeth has been diagnosed with borderline personality disorder and is registered blind. She has put herself at risk, repeatedly leaving the house in an unsafe state, running towards traffic and taking overdoses. Over the years she has attempted to take her life on several occasions, abused alcohol and prescription drugs. In the years since the assault on Elizabeth, I have faced many challenging situations, many caused by her unpredictable and dangerous behaviours that often appear out of her control. Other challenges have been created by services either being unwilling or unable to provide appropriate and timely treatment and care for Elizabeth’s complex needs. On occasions simply discharging her and hoping her problems will go away.
For over twenty years my life has been a challenge and an “emotional roller coaster” at times not knowing what the next day will bring. I believe I am well placed to engage with Health Care public consultation. I have learned what works and what doesn’t. Speaking openly and publicly about my experience brings some relief, knowing that health professionals and researchers want to hear the “good, the bad and the ugly” about failures of health care in the UK, is refreshing. Being able to talk about my experiences brings some relief to me but also can be emotional and troubling.
I have been involved with several research projects with Newcastle University and involved with mental health Trust projects and staff development around carers and family members. I have considerable interest in personality disorders, and I believe it is still an area of health care that is still not fully understood or provided for. The effects on family members living with a person with complex needs can often easily be underestimated by services.
My motivation to participate in research and development is that no other person, family or carer should face the lack of understanding, empathy and failures we have faced on so many occasions. On a positive note, at the moment our lives remain difficult but stable. Brought about by consistency, understanding and empathy from services. But all this we had to fight for!
Researchers should not forget to inform all participants of the outcomes and how the research will be used.
Public Contributor: Roy Fussey
By Dr Matt Cooper, NIHR Newcastle PSRC, Safer Integrated Health and Social Care Environments Theme Research Associate.
Over the past year of the Tilly Hale Carer Research Panel, we have met on several occasions both in person and online. The sessions have been hugely beneficial to both myself and our research team. The purpose of the group was to establish a collaborative space where carers could help priorities and set the agenda for the research we are doing within the school and patient safety group. Initially I found it difficult to work out how to ensure the group made an impact and how we could become sustainable beyond the funding. I worried that the group would not have a single direction, and I wanted to ensure I brought meaning and a purpose to the group. Looking back over the past year I think the group has made more impact that I initially would have realised.
Since the group was established, I have had the absolute honour in being able to listen and learn from the experts in what caring should be about, the challenges they face, and where we need to be doing more to research to support the development of services. The carers in the group are passionate about providing the best support for the people they care for, while providing a selfless act of giving their time and energy, despite the challenges they face or the impact on their own health and wellbeing.
The group has informed my thinking and critical review of research more that I had accredited before, and they have made me think more holsitically about the research we can do. Within our research team we now have 7 projects in this space including, student carers, carers involvement in medication management, carers involvement in hospital at home care, carer wellbeing, and support for ethnically marginalised carers. All these projects I believe have been informed by the panel and give thanks to them and their openness to support this.
Of course, we are also working on an art piece which has been commissioned around what it means to be a carer, and below is an intial draft of this. This piece I hope can be sent far and wide to demonstrate the vitally important role carers play in the healthcare landscape and support the research we are doing. I thank the research panel for their honest reflection when developing this piece and I hope that it does justice to their experiences.
