Service users and carers

My name is Lily.  I first became involved with the Service User and Carer Council at Edge Hill University after being diagnosed with Von Hippel Lindau Syndrome (VHL).  My diagnosis has included long in-patient stays in hospital, development of a physical disability and requires screening referral for the rest of my life.

I am also involved with a national support group for people with VHL and there is a conduit between the work of the (support) group and as a service user.  I raise awareness within both organisations.  I have experience as a carer too, in providing support for a close relative.

Involvement and sharing experiences of health and social care systems, is one way we help  influence the future delivery of education and in supporting patients, their families and carers.

My involvement within the Service User and Carer Council has been very constructive and my perspective and experiences have been well received in making a positive contribution in the training of health care workers of tomorrow.

My name is Anne.  I have been a foster carer for 40 years and also cared for my elderly mother.  My role with Edge Hill University started with the social work team, now I work across the Faculty of Health, Social Care and Medicine.

I am part of the service user and carer interview support team, I take part in ” role playing” different scenarios, and I also contribute to modules where I give real life case studies, to describe how foster carers have to care for children in the care system.

As we are still fostering I feel my contribution to student learning is real & up to date.  I hope I leave students able to reflect and debate on the good ( and bad) examples I give. I try to show students how important good communication is & show them examples of good outcomes.

Sharing such experiences offers a feeling of value, both for myself, students and staff.

My name is Dawn and I have been on the service user and carer group since 2013.

I am Mum to my 23 year old son, Spencer who has complex needs and lives at home with his two brothers, his dad and I. He also has a step sister who comes to stay regularly.

Life at home is challenging at the best of times, this is both helped and further challenged by the fact we have 2 personal assistants (PA’s) in the house 21 hours a day.

As a result of our beautiful and very complicated lives, we are able to offer students a snap shot of what it is like for us to manage on a daily basis. Both student nurses and social workers have evaluated how helpful this is for their studies and future careers.

I have been fortunate to help in many ways; giving talks, sitting in on interviews, role plays, assessments, as well as innovative projects such as sibling support surveys and respite reviews.

I say that I have been fortunate, as I am proud of the fact that our lives are part of a movement that is driving forward personalised care and support.

I have been Bi-Polar since the age of 19 and I am now 72. During this time, I have I experienced many manic episodes and depressive periods. These include being taken to a low security hospital, hand cuffed in a police car, restrained, and sectioned under The Mental Health Acts and held in a seclusion suite without a window. My detention was reviewed by a tribunal comprising a psychiatrist, GP, nurse, social worker, and an independent pastoral observer.

Bi-polar is a serious lifelong mental illness characterised by extreme high and low depressive mood swings. It can reduce the life span and long levity by about ten years and high manic episodes can seriously result in suicidal acts and self-harming. Bi-Polar can be self-managed with medication especially lithium and anti-psychotic drugs. Regular psychiatric appointments are required and adjustments in medication are made face to face or by telephone. During COVID face to face appointments were limited and relied on telephone consultations which resulted in clinical misunderstandings.

My diabetes type 1 started with a Ketoacidosis DKD Episode when I went into a coma and was hospitalised. It is necessary to manage my daily insulin and medication; now I have Diabetic Sensors which are electronically connected to my smart phone. Regular foot inspections and retinal photographs are required. In addition, I have developed CKD Chronic Kidney Disease stage 3 which is a global epidemic we’re 37 million people are affected.

Being part of the ageing population of 60-80 I am now prone to Diverticulitis which is a very painful condition of the lower abdomen which can involve an AE emergency hospital visit. It now seems that dementia is inevitable and can develop gradually with loss of memory, mobility problems that are affecting large numbers nationally and internationally. Recently, I had a medical assessment of mobility, agility, and numeracy for possible Parkinson’s Disease. I understand that the symptoms of dementia and Parkinson’s can be similar and might also reveal signs of an earlier ‘stroke’. Over time, walking has become difficult and my ‘gait’ is uneasy. Falls can become damaging resulting in the need of hip replacement. Mobility aids and a walking stick have become part of my lived experience. My eyesight has become a major problem. The eye clinic closed down during COVID. Cataracts developed in both eyes and needed removal by surgery. Glaucoma has developed and medical eye drops have been prescribed. Dental problem come with ageing, with fillings and painful extractions.

Given the complexity and overlap of all these mental and physical conditions there is an important and urgent requirement for integrated and coordinated care. For me my GP and Surgery is very important but there is also many other health care professionals and agencies responsible for my mental health and physical wellbeing. They need new ways of training to consider complex needs. Also, self-awareness and therapeutic care is important. Mersey Care have developed a number of Life Rooms and they offer inclusive projects in Art for Well Being, Music, poetry, dance, and computing.