Trustees of The M.E. Trust
Dr Gareth Tuckwell Dip. Pall. Med (Univ of Wales), MRCGP
Gareth was Chief Executive Officer of Burrswood Hospital, Kent from 2007 for a five-year term, Clinical Director of Hospice in the Weald from 2003 to 2007, and Regional Director of Macmillan Cancer Support from 2000 to 2003.
Gareth was a Trustee of Macmillan Cancer Support from 2003 to 2013 and a Trustee and subsequently chairman of Friends of Vellore (UK) from 2011 to 2016. Gareth was also Medical Director of Burrswood Hospital from 1986 to 1999. He is a Vice-President of Phyllis Tuckwell Hospice Care and is a member of the Sanctuary Group Board; he also chairs the Sanctuary Care Boards. He brings invaluable experience in working with charities, in clinical leadership, care delivery and clinical governance to The M.E. Trust, in addition to a deep understanding of the challenges affecting people with M.E., and their families.
Hannah is a former London solicitor. She became ill following a trip to the Far East. She was given a vague diagnosis of ‘probable ME’ by her doctor who also advised her not to tell anyone the diagnosis ‘because there is a stigma attached to it and people will think you have something psychologically wrong with you’. That was the only advice he gave her. The second doctor said, ‘Well, you probably know more about this than I do. What would you like me to do?’ By the third doctor, she was bedbound.
Hannah was ill for over 12 years, spending many of those years bedbound and in great pain. Throughout that time her G.P’s advised her that no hospital bed was available on the NHS. She was provided with just 13 weeks of social services care. Her private health insurance did not cover ME. The initial ‘probable diagnosis’ was eventually confirmed many years later. Her GP at that time had feared she may have an undiagnosed brain tumour or MS.
In May 2008 Hannah was told by her GP that she ‘probably’ would not recover. That month she travelled to a private hospital where Dr Paul Worthley had pioneered a service for people with ME/CFS. Within a month of being admitted she was well enough to begin walking along the hospital corridor.
Hannah founded the ME Trust with the aim of bringing life transforming treatment, care and support to people with ME/CFS.
Philip is Head of Partner Capital & Taxation at solicitors Clifford Chance LLP. He trained as a Chartered Accountant at Arthur Young McClelland Moores & Co and qualified in May 1998. Philip has specialised in international tax working in the profession with Arthur Young and Touche Ross, and then in industry with the Fiat Group and since 2005 with Clifford Chance, one of the world’s pre-eminent law firms.
Philip has experienced at close hand some of the challenges faced, especially for children, when doctors and other professionals run out of surgical solutions. Philip employed a CFS/ME sufferer to help run a project and was amazed at what can be achieved with the right attitude and determination in the face of a debilitating illness.
Rollo has worked in Parliament for the last six years and is currently Chief of Staff to a senior MP. He studied Theology and Religious Studies at Bristol University and was a youth and student worker after graduation.
Rollo had ME from the age of 15-25 and so has personal experience of the immense difficulties people face who suffer from this debilitating illness. He endured periods of being bed and house- bound but managed to complete his school and university education despite considerable challenges.
He is delighted to have been asked to join The M.E. Trust board and to assist in the work to help those with ME lead an active life once again.
Howard's professional career has been in city law firms, a commercial lawyer specialising in company restructuring. He was for two terms the chief executive of a large international law firm in the City of London and led it into its successful combination with a US law firm creating one of the biggest global firms. Throughout his career Howard been an active supporter of a variety of charities. Howard said on his appointment:
"I'm honoured to have joined the board of the ME Trust and to be working towards its goals, including the establishment of a much-needed centre of excellence for the treatment and support of people with ME/CFS and their dedicated carers. We need to marshal the expertise in ME/CFS, and so enable research into its causes and develop treatments. ME/CFS is widespread - there are thought to be over 250,000 people ill in this country alone - and it steals people of years of normal life. It is disabling and painful and sadly our health services are often unable to provide the care and expertise needed to help people with the illness."
Solicitor and partner at Withers, London
Steven is a Partner with particular specialism advising on risk management issues and the resolution of disputes over the governance and administration of charities, not for profits, social enterprises and private trusts. He also advises on the formation and governance of charitable structures.
Steven trained and qualified at Herbert Smith where he worked closely for 10 or so years with John Wood, who in February 2008 was appointed to the board of the Charity Commission.
Steven has advised a wide variety of national and international charities, statutory bodies, and not for profits on their governance and charitable activities and dealing with the Charity Commission on registration and administration issues. In 2007, Steven was invited to join the Charity Law Association’s working party to review the Charity Commission’s consultation document on “Charities and Public Service Delivery”. Steven has written for various professional and industry journals in the UK, for example Charity Finance, and is a regular speaker at seminars/conferences in London and abroad.
Steven is a member of the Charity Law Association and the Association of Contentious Trusts and Probate Specialists.
Peter is a former senior civil servant with national and international experience. More recently he has been a consultant helping businesses build relationships at home and abroad.
Between 1999 and 2003 he was a Lay Magistrate in South-West Surrey. He has been involved with ME for 15 years, as a result of a close family member suffering from it.
Dr Paul Worthley
Our trustee and medical advisor, Dr Paul Worthley has over 20 years’ experience of helping people with ME/CFS.
Dr Paul trained at St Bartholomew’s Hospital, London, where he qualified in 1976. He spent three years at the Worcester Royal Infirmary, went on to general practice training in Hackney and then to two years’ general practice in East London, before returning home to Australia where he worked at the Adelaide Children’s Hospital from 1983 to 1987. He returned to Worcester to a variety of general practice and paediatric work before moving to Burrswood Hospital in Kent in 1992. In 1996 he obtained his Diploma in Palliative Medicine.
Working at Burrswood Hospital for 24 years, Dr Paul was resident Senior Physician until 2014 and for the last two years ran an outpatient clinic for people with ME/CFS and related illnesses. Working with physiotherapists and, more recently, an occupational therapist, he pioneered a whole person and individually tailored approach to caring for people with this spectrum of disease. which has benefited hundreds of patients. The value of his approach was confirmed by a Kent University study.
Dr Paul has over many years learnt a lot both from patients and by meeting the few medics who work in this field. He has gained an expertise in the area of ME/CFS and has helped hundreds of ME/CFS patients.