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Pituitary Foundation National News
Membership Information
Who Can Join?
National Membership is open to anyone with an interest in pituitary disorders, including patients, their relatives, friends and carers, and medical professionals, including GPs and endocrine specialists.
How Much Does it Cost?
£15:00! Membership of the Pituitary Foundation for Solent Branch is free.
However donations to the Foundation to help meet our running costs are always welcome.
How Do I Join?
It's easy!
Either:
Send your name and address to us by post at
The Pituitary Foundation, PO Box 1944, Bristol, BS99 2UB;
telephone us on 0845 450 0375;
e-mail us at helpline@pituitary.org.uk; or
complete the form on the "Contact Us" page, linked below.:
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The Pituitary Foundation
Breaking News
The website is being restructured and new articles added. The main site should be ready mid May 2008.
Peter Randle
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MedicAlert Emblems - important!
If you wear a MedicAlert emblem, or if you care for someone who does, please check the 24-hour emergency telephone number which is engraved on the back of the emblem.
If it shows the old 0171 number, IT IS INCORRECT and the emblem should be replaced.
Copyright © 2004 - 2008
The Pituitary Foundation, PO Box 1944, Bristol, BS99 2UB
Tel/fax: 0845 450 0375 . E-mail: helpline@pituitary.org.uk
Registered Charity No: 1058968.
Registered Company No: 3253584
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The Pituitary Foundation
 | About The Pituitary Foundation
The Pituitary Foundation is a national patient support group for pituitary patients, their families, friends and carers, which operates throughout the UKand Republic of Ireland. It is estimated that there are between 40,000 and 70,000 pituitary patients in the UK and the Foundation was launched in November 1994 following research amongst patients and clinicians regarding the need for such an organisation. Charitable status followed in September 1996.
Core aims of The Pituitary Foundation are to:
Provide support to pituitary patients, their families and carers.
Act as a source of information on lifestyle issues faced by sufferers of pituitary disease.
Increase public awareness of pituitary disorders.
The objectives of The Pituitary Foundation are to:
Continue to provide a quality service.
Raise awareness of the Foundation and pituitary disease within both the medical profession and general public.
Develop external representation and lobbying to effectively influence government decisions.
Continue to be known as a supportive and caring organisation.
Make the Helpline more accessible.
Develop a full set of up to date leaflets and audiotapes.
Encourage cohesion of local support groups, trustees and staff, and draw the wider membership closer.
Help volunteers to develop their skills and use them effectively.
Structure staffing levels and the skills to support the workload.
Develop the capacity of fundraising to establish financial stability, which ensures continued provision of core services and enable the Foundation to be driven by members' needs.
The Pituitary Foundation is currently funded entirely through voluntary donations, support from the pharmaceutical industry and grants from the Community Fund, the Department of Health and several grant-making trusts. We have taken a conscious decision not to charge a membership fee, as many of our members and potential members are unwaged due to their chronic health problems.
New Executive Director - Mrs Kit Ashley:
Mrs. Kit Ashley, Executive Director of The Pituitary Foundation. Since graduating from Purdue University in West Lafayette, Indiana, USA, I’ve worked only in not-for-profits. I started my career as a fundraising database co-ordinator at the Rocky Mountain Multiple Sclerosis Center. I left The States as Acting Executive Director at the Colorado Neurological Institute.
My first role in England was working as the Manager for a Community Centre on a council estate in Weston-super-Mare. I loved my job and we had a lot of fun helping a variety of deprived people, but it was part-time and I found I preferred to be busy so mostly worked full time (and then some). I saw the advertisement for Patient Support Manager at The Pituitary Foundation and made the difficult decision to leave my folks on the estate and went back to my true vocation, working for a healthcare non-profit.
I came to The Pituitary Foundation in May 2005 as the Patient Support Manager and was promoted in July 2006 to Executive Director. I’d worked so many years with folks who had MS, Parkinson’s, malignant brain tumours, epilepsy…all high profile conditions that people understood immediately why these patients needed support. My introduction to the pituitary community was an eye-opener! Working in neurology for so many years, I, of course, knew what the pituitary gland was (as our neurosurgeons performed pituitary surgery) but I was to experience a new challenge, working to support people with rare conditions. The isolation, and misunderstanding, of patients with pituitary illness is staggering. It isn’t simply the general populace who don’t understand, but also medical professionals, like GPs!
The challenge to make people aware is enormous. Further, The Foundation’s aim to support people from the unheard of pre-diagnosis throughout their pituitary journey is extraordinary in the world of healthcare charity. The mean time to diagnosis for a pituitary patient is five years. That is unacceptable in terms of well-being, both physical and mental and that’s exactly where our work begins. It doesn’t end there, not even close.When I talk to the many people I talk to, at support groups, medical conferences, meetings with consultants, benefactors and friends in my dining room, I explain my work and I see them begin to understand. Then I suck them in (it’s my job, and it doesn’t stop at the office, not in charity). And that is the beauty of our community. I have never, not in eighteen years working in charity, worked with a more thoughtful, caring, generous population. Everywhere I turn, the pituitary community reaches out and works together to inform and educate, to offer support and understanding, and to raise awareness. We have over 150 volunteers running support groups, being telephone buddies, staffing our helpline, raising money and so many odds and ends, we seem like a big gun in the charity world, rather than relatively small (we only have 4.5 full time equivalent staff and less then £310,000 a year turnover!).I spend my days overseeing the day-to-day operations, from business, to human resources, to strategy. I work to keep relationships strong with benefactors, donors, the medical community and other organisations such as the Society for Endocrinology. I also raise funds and write grants. I help other staff and volunteers to look after our online forum and I answer the helpline one day a week.
Recently, I was asked if The Pituitary Foundation had one primary message to get out there, what would it be. I was stumped, not because I couldn’t think of a message, but because I was frustrated by the fact that I couldn’t think of only one.
There’s a lot of work to be done, not work that would be nice, but work that is essential, to try to better the pituitary journey. So, I suppose, the primary message I would have is to express gratitude to the many out there who are working hard in so many different ways to better that journey. I would tell them not to give up. Lastly, I would say there is hope that the small successes we see along the way will build to a brighter future…because we’re working together
Kit Ashley, Bristol HQ
Copyright 2008 Kit Ashley
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Patient Support Manager - Mrs Pat McBride:
The role of Patient Support Manager
I felt very honoured to be offered this role, which I started in August 2006 for The Pituitary Foundation. As a pituitary patient myself, I felt that I could offer personal ‘patient’ empathy to the role - as I’ve been a pituitary patient for over 20 years- together with my experience of what the Foundation can provide as an organisation
My role is varied, but primarily involves taking calls from the National HelpLine- these calls can be from patients or their carers (family members). Some patients are newly diagnosed and naturally distressed, so my aim is to calm, reassure and support them through their treatment and tests; diagnosed patients also can require ongoing support through their journey. We receive a number of calls from those who are having difficulty actually being diagnosed with a pituitary condition and can help point them in an appropriate direction to establish a diagnosis, or not.
Other calls can include endocrine personnel, journalists and calls which need referring to our endocrine nurse, or business unit. When the phone rings, you never quite know who will be on the other end, or what the issue will be, but we are prepared. I say ‘we’, as other staff and a core of trained volunteers take on HelpLine calls if I am away or need to attend to other business.
HelpLine emails also come in to me via our website www.pituitary.org.uk [Link below]
Again, patients diagnosed or not, and at any stage in their journey seek information and support. Carers and other non-patients also use this form of contact and some will register to our Forum for further contact. I check (and help moderate) the Forum daily and offer information and support where I can.
Other aspects (briefly) of my role include the supporting and training of our Telephone Buddies, who are an immense help to those patients and carers who want to speak to someone who has a similar condition and can talk about similar issues.
I assist with regional and national Pituitary conferences –such as finding venues, approaching speakers and helping out at the event to ensure everything runs as smoothly as possible.
As editor of Pituitary Life, I collate patient’s stories, find endocrinologists to write articles and generally put three issues a year together.
My role is certainly busy and varied, but immensely satisfying.
Pat McBride
Copyright January 2008 Pat McBride
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Please visit the HQ Site for full details, extra information, documents to download and for National Information including Venue dates.
The Pituitary Foundation is a Company Limited by Guarantee Registered company number: 3253584 Registered address: 86 Colston Street, Bristol BS1 5BB, United Kingdom Registered charity number: 1058968
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Pituitary News by email
Pituitary News by Email
If you would like to receive your pituitary news by email; please send your name and address by email to:
news@pituitary.org.uk
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Richard Jones - Director, BMA Patient Information Award
Copied Invitation from:Richard JonesDirector, BMA Patient Information AwardDear colleagues I'd like to take this opportunity to remind people that there is still time to enter patient information materials to this free prize. The official closing date was the end of March but we can still accept entries for a couple of weeks. This annual award has grown year on year since its inception in 1997. Last year nearly three hundred leaflets were submitted and 29 certificates were awarded at a ceremony at BMA House in November 2003. The first prize was won by for Why should I test? by the Terrence Higgins Trust. Each leaflet is reviewed and a shortlist is drawn up by a judging panel which last year included Mary Last, the originator of the award, and Charlotte May, the head of BMA public enquiries. Leaflets should have been published, in either new or revised editions, in 2003 or before the end of March 2004. This award is for leaflets of under 100 pages There is no entry fee. You can read more about the award, the rules of entry and the appraisal criteria at: http://www.bma.org.uk/ap.nsf/Content/LIBBMAPatientInformationAward Three copies of each leaflet should be sent to the Competition Administrator, Lorna McLaughlin, at the address below by Friday 23 April 2004. We recommend that you use this online entry form: https://www.bma.org.uk/bmalibrary.nsf/pipm?OpenForm But printed entry forms can be requested from Lorna McLaughlin on 020 7383 6698 or at lmclaughlin@bma.org.uk There is a separate prize for patient information websites. There are no year of origination criteria for this category. Last year this was won by the Northern Cancer Network for:
http://www.cancernorth.nhs.ukThe online entry form is at: https://www.bma.org.uk/bmalibrary.nsf/piw?OpenForm Best wishes Richard Jones
Director, BMA Patient Information Award |
Communication Skill's of Medics - BMJ Editor 10th April 2004
Saturday 10 April 2004 http://bmj.com/cgi/content/full/328/7444/0-gEditor's choice
The teaching of communication skills may be misguided
Each day in Britain there are some two million consultations between doctors and patients and around 100 million decisions about patient care. Any fundamental reform of health care will depend on influencing those consultations and decisions, and they are, I suggest, so far largely untouched. "Thank God," I hear many doctors say, but who could disagree that much of what goes on in those consultations is capable of considerable improvement? One method of improving what happens in consultations is through teaching doctors communication skills, but a paper from Liverpool suggests that the teaching has been driven too much by what doctors think is good communication rather than by what patients want (p 864). The authors studied consultations between 12 doctors and 39 patients with breast cancer and asked patients "to describe aspects of communication they valued or deprecated." The results suggest that some teaching on communication may be misguided. Patients didn't think about their doctors in terms of how well they communicated. Instead, they cared about whether their doctors had expertise, had a personal relationship with them, and respected their autonomy. Teaching has emphasised shared decision making, but "no patient described a process of decision making." They liked instead being given a recommendation with the option to say no, and "they had concurred with clinicians' recommendations."
The paper offers practical examples of how the doctors communicated expertise, built relationships, and showed respect for the patients. Interestingly, "being a doctor was often sufficient" to convince patients of expertise. In other words, patients start by trusting doctors. Trust doesn't have to be won--but can be lost: "Trust in doctors' expertise was irretrievable if patients thought they had been misled." Doctors could also encourage belief in their expertise by displaying confidence and efficiency, making things happen, and by answering all questions without hesitation. Non-verbal cues--eye contact, smiling, touching--were important in building a relationship. "The simplest verbal strategy was for the patient to be told she was special." Humour and idiosyncrasies also helped. Patients felt respected when doctors communicated with them at eye level and matched their language to the patients' expectations. The authors argue that their results can be generalised, but I wonder. Patients with breast cancer may be radically different from patients with conditions that are not life threatening, and it's not clear if patients were offered the choice of sharing decisions. It might be that they were content with what they were offered but could have found more empowerment even more attractive. And--a question that interests me--how do you share the uncertainty that is ubiquitous in medicine and still seem to have expertise? Richard Smith, editor BMJ
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Coronation Street: Sunita has a prolactinoma.
The Pituitary Foundation
Coronation Street story line has Sunita with a Pituitary illness - a prolactinoma - and sadly, Sunita, requires surgery.
Story on the National website, link below:
http://www.pituitary.org.uk/corrie.htm
The Pituitary Foundation (UK)
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MEMBERSHIP: Pituitary Foundation (UK)
Membership Information
Who Can Join?
Membership is open to anyone with an interest in pituitary disorders, including patients, their relatives, friends and carers, and medical professionals, including GPs and endocrine specialists.
However donations to the Foundation to help meet our running costs are always welcome.
How Do I Join?
It's easy!
Either:
Send your name and address to us by post at
The Pituitary Foundation, PO Box 1944, Bristol, BS99 2UB;
telephone us on 0845 450 0375;
e-mail us at helpline@pituitary.org.uk; or
complete the form on the Contact Us page, linked below.:
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Pituitary Foundation (UK) - Who's who
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Trustee list (as of AGM, April 2008):
Mr Terry Lloyd, Chairman (Patient, Former Area Co-ordinator Brighton Supprt Group, Former Chairman, Liaison and Resource Group)
Dr Stephanie Baldeweg (Endocrinologist, University College London Hospital)
Mr Mike Beaven Honorary Treasurer (Carer)Mrs Ann Bushen (Patient, Area Co-ordinator Salisbury Support Group)Mr Steve Bushen (Carer, Treasurer Salisbury Support Group)Mrs Carol Holmes (Retired Endocrine Nurse)Mr Mike James (Patient, Member of Bristol Support Group, Chairman of the Awareness and Fundraising Working Group) Mrs Marian Lanyon (Pituitary Clinical Nurse Specialist, National Hospital, Former Area Co-ordinator and launched the Ipswich and Suffolk Support Group)Dr Marianne Morris (Health Psychologist, University of the West of England)Dr John Newell-Price (Endocrinologist, University of Sheffield, Northern General Hospital, Chairman of the Medical Committee)Mr Aidan Pennington Honorary Secretary (Patient)Miss Jane Pedder (Patient, Experienced Qualified Counsellor)Mrs Sue Tumelty (HR Expert)Dr Tony Woods (Statistician)Medical Committee:
Dr John Newell-Price (University of Sheffield, Northern General Hospital, Chairman) Dr Stephanie Baldeweg (University College London Hospital) Professor Peter Clayton (Royal Manchester Children's Hospital) Dr Trevor Howlett (Leicester Royal Infirmary) Mr Mohsen Javadpour (The Walton Centre for Neurology & Neurosurgery) Professor Stafford Lightman (University of Bristol, Department of Medicine) Professor John Monson (London Clinic) Dr Jonathan Pinkney (Royal Cornwall Hospital, Truro) Mr Michael Powell (National Hospital for Neurology and Neurosurgery, London) Dr Andrew Toogood (Queen Elizabeth Hospital, Birmingham) Dr Peter Trainer (Christie Hospital, Manchester) Professor John Wass (Churchill Hospital, Oxford) Dr Jonathan Webster (Northern General Hospital, Sheffield) Ms Sue Thorn (Society for Endocrinology) Ms Maggie Carson (Royal Infirmary, Edinburgh)_________
The role of the Medical Committee includes the following:
Answering specific patient enquires (processed through the Patient Support Service, which we like to turn round in between 48-72 hours wherever possible).
Assessing our current range of literature, advising on new titles and updating existing material.
Assisting in the writing and commissioning of new titles.
Advising on the medical content of Pituitary News and either contributing or advising on commissioning articles.
Advising on the programme of, and speaking at, or suggesting speakers for, the National Conference.
Advising on the content of the website.
Supporting local support groups in their area and either speaking at or suggesting speakers to attend group meetings.
Use of contacts to invite others to support our work.
To be accessible to the media when we issue press releases.
Assisting with fund raising as appropriate e.g. making presentations to Grant Making Trusts.
_________________Staff List
Mrs. Kit Ashley, Executive Director
Mrs. Pat McBride, Patient Support Manager
Mr. Steve Ware, Business Manager
Mrs. Alison Milne, Endocrine Specialist Nurse
Mrs. Janette Moulds, Business Unit Co-ordinator
Mr. Neil Jefferis, Finance OfficerCopyright 2008 pituitary Foundation (UK)
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