A virtual performance of the play ‘Fighting For Life'

The ‘Fighting For Life’ play is based on the real lives and experiences of Helen’s parents and their family in trying to get appropriate care and support for both parents towards the end of their lives. Her mother lived with dementia for 10 years and her father cared for her at their home for around 8 years before he was diagnosed with Motor Neurone Disease aged 85 and died 7 weeks later. After her father’s death in hospital, Helen co-authored a family case study called ‘The Findlay Report’ covering a four-month period towards the end of her father’s life that highlights their experiences and recommendations on how things could have been better handled. This report has been used as a campaign tool by family members and provided inspiration for the writing of the play (a copy of the report and story of how it came to be written can be found on the play website: www.fightingforlife.org.uk) Helen’s working career has been spent in communications at senior levels within the business, industry, public and charitable sectors and consultancy. Following the experience with her father and mother, she moved into palliative care research and is an active voluntary member of PPI groups at Marie Curie; Cicely Saunders Institute (King’s College); Hospice UK and for 10 years with the National Council for Palliative Care and has spoken at numerous conferences, seminars and training events. She is also a PPI member of the NIHR Hospice Consortium Partnership and on the PPI steering group for the Embed-Care Dementia research project. Helen holds Bachelor and Master’s degrees in politics and was awarded a PhD in 2018 (Brunel University) for her thesis exploring perspectives on service user involvement in palliative care and potential pressures that could influence the way such care is provided in the future.

Katherine is Head of Employers for Carers at Carers UK.  Employers for Carers (EfC) is a growing service and forum for employers committed to developing good practice to support the 1 in 7 people at work who are caring for older, disabled or seriously ill family members or friends. Managed and supported by the specialist knowledge of Carers UK, EfC provides practical help and advice for employers and promotes the business benefits of supporting carers.  On its 10th anniversary (in 2019) EfC launched Carer Confident, a UK-wide employer benchmarking scheme dedicated to carer support. Katherine’s expertise is in the field of employment and equality policy. On joining Carers UK in 2007 she worked on the development of Employers for Carers (EfC) and was its initial manager when it launched as an employer membership forum in 2009. Katherine was co-Secretariat to the EfC/Carers UK/HM Government Carers in Employment Task and Finish Group (2012-2013) which published a definitive report on the business benefits of supporting working carers. Prior to Carers UK, Katherine worked at the Trades Union Congress, Leeds University Business School, in the communications sector and as an independent equality and diversity consultant.

Brian Daniels is an award-winning playwright who has written more than 20 performed plays on a range of social and health issues. He was commissioned by the National Council for Palliative Care (now Hospice UK) to write 'Homeward Bound' and 'Bounce Back Boy' both filed and used extensively for education and training. He has been commissioned by three separate hospices to write about palliative care - the plays are 'Hello, my name is' based on the life of the late Dr Kate Granger, 'Both Sides Now' about younger people dealing with the loss of a loved family member. His play 'Let's Talk Lymphoedema' was launched in New York in 2021 and will be performed at St's George's Hospital, Tooting in September 2021. He is currently researching for a new play about the incidence of younger men who end their own lives. Brian is represented by Meg Davis at the Ki Agency and interested to create drama around any health and social issue for education and training purposes. 

Dr Wheatley is a Consultant with an NHS Palliative Care Team in South Wales, collaborating with hospital, primary care and community colleagues. For many years she has worked to provide high quality palliative and end of life care for patients with life limiting illnesses other than cancer. Her current practice focuses particularly on care for people with fibrotic lung disease and people with motor neurone disease. Dr  Wheatley has a particular interest in medical ethics at the end of life. Having studied for an MA in the Ethics of Cancer and Palliative Care at Keele University, she has worked with Cardiff University’s Postgraduate Palliative Care / Medicine Courses to support colleagues to develop their critical thinking skills around ethically challenging situations. She is a member of her Health Board’s Clinical Ethics Committee. Outside of work Dr Wheatley is a keen SCUBA diver, and is eagerly waiting to spot her first octopus in UK waters!

Jan Clarke has worked almost entirely in the field of neuroscience nursing since qualifying as a nurse many years ago. Initially as a neurology ward based nurse and then as a unit manger of the neuro-intensive care unit at the National Hospital for Neurology and Neurosurgery. In 2003, she took up the post as the clinical nurse specialist for Motor Neurone Disease (MND) at the same hospital. In June 2016, Jan was recruited to England's first Nurse Consultant post for MND. The MND service at NHNN is now the largest consultant led MND service within the UK. Alongside neurological, ITU and management qualifications, Jan as an MSc in palliative care from Kings College London ad has a specialist interest in advance care planning and home ventilation for this group of people and offers the only nurse Botox clinic for salvia management in MND in London.