Patient perspectives: Pat McBride
Rebecca Aris interviews Pat McBride
The Pituitary Foundation
There are an estimated 50,000 – 70,000 pituitary patients in the UK alone and yet as pituitary disorders are relatively hard disorders to diagnose, many patients remain undiagnosed. For those that do receive diagnosis resources and literature remain scarce. The Pituitary Foundation offers support and information to these patients and their carers, family members and friends at a time that can feel extremely isolating.
We speak with pituitary patient Pat McBride, Patient Support Manager at the Pituitary foundation about her experience as a patient and the wider unmet patient needs in this area.
To listen to this interview, please click on the play button below, with a shortened transcript of some edited highlights shown in print below.
RA: Hi Pat, thanks for speaking with me. First of all, could you tell me about your experience as a patient?
PM: I have pan-hypopituitarism which was caused by a pituitary abscess. My first symptoms appeared in 1985 and I was finally diagnosed and operated on in 1986.
RA: How easy did you find it to find good information about your disease and what sources did you find useful?
PM: At that time, there was no information about pituitary conditions, but in 1994 I was told about the launch of the Pituitary Foundation, who I contacted immediately. This charity was the only source of information and I found their early leaflets and support invaluable to help me understand what had happened to me and all about the pituitary gland.
“We realise that more support should be available for parents &, families of child patients. “
RA: What do you see as the key areas where more support is needed for patients with pituitary disorders?
PM: The key areas we have in place, such as the HelpLine, booklet library, Pituitary Life magazine, nurse HelpLine and website (forum) are needed, for face-to-face support, our LSGs around the country enable patients and their families to meet others locally on a regular basis. We realise that more support should be available for parents &, families of child patients and also for teens and young people. This is something we would love to be able to provide in the near future.
RA: How did you become so heavily involved in the Pituitary Foundation?
PM: I knew how difficult it was for me without support before the Foundation began and offered to volunteer almost as soon as I contacted them. I launched a local support group and ran that for 5 years. A position for co-ordinating north LSGs came up and I applied. I worked on this project for 3 years and then was kept on for a further 3 years adding in Early Awareness / diagnosis project to the north co-ordinator role. My passion and commitment grew, my skills in supporting and talking to people led me to be offered the post as Patient Support manager which I have done for the past 6 yrs. I have learnt a great deal about patients, the conditions affecting them and I’ve been privileged to have excellent training through the PF to increase my skills in this area.
“I feel it is essential that pharma gain a good understanding of what their products mean to patients.”
RA: What has your involvement with pharma been?
PM: Part of my current role is to raise awareness of the PF through endocrine exhibitions and to give talks about the patient experience to pharma companies. I feel my involvement helps to bridge the gap of knowledge about the patient experience taking the drugs and how they actually feel within their conditions. Because I have first-hand knowledge of taking a broad range of pituitary hormone replacements and talk to many patients about their experiences, I can represent the Foundation and the work we do.
RA: Would you like to see pharma getting more involved with the foundation?
Very much so, I feel it is essential that pharma gain a good understanding of what their products mean to patients and the effects brought about by taking these products. In turn, it is just as important for us patients that pharma are given this awareness from their (patient) perspective.
Pharma are obviously important to us, in terms of informing and working with us about new or existing products so that we can inform our community most appropriately.
RA: From your own personal experience and also with your broader view of patient needs from the work you’ve been doing with the pituitary foundation, how do you think pharma could better meet patient’s needs in this area and improve the patient experience?
Working with us at the Foundation to gain insight into meeting patient need, supporting us to improve the patient experience, in terms of patient recruitment (and interviewing) in researching drugs, packaging, patient information leaflets. We strive to improve patient experience in every area, from early diagnosis, through surgery and on their journey. Throughout these stages, our services are comprehensive but with pharma support we can continue to improve them so that patients gain much more.
Examples of this:
• Our magazine pit life, which is valued (called ‘the jewel in the crown’ by members) and offers the patient the latest news on all things pituitary.
• Booklet library – we update our information regularly to keep abreast of the appropriate facts.
• Conferences – an opportunity for many patients and families to come together and learn and share.
RA: Pat, thank you for your time and insights.
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About the interviewee:
Pat McBride (Patient Support Manager) – Pat began volunteering with The Foundation back in 1995, as a Volunteer Area Co-ordinator, launching Liverpool Support Group in 1996. Pat’s pituitary condition of pituitary abscess, Diabetes Insipidus and high Prolactin was diagnosed in 1986, resulting in craniotomy surgery and Pat takes all replacement hormones to this day. Pat started as a Regional Co-ordinator working with Local Support Groups and on the Early Awareness Project (EAP). In August 2006, Pat became the Patient Support Manager with responsibilities including the National HelpLine, Pituitary Life Editor and our Information service.
How can we raise awareness of pituitary disorders?