The Immunodeficiency UK patient representative panel is made up of individuals who are directly or indirectly affected by immunodeficiency. The members of our panel help to support our work and represent different regions of the UK and joined our panel when Immunodeficiency UK was known as PID UK.

Hannah, patient representative

I live in Surrey and was diagnosed with unclassified hypogammaglobinaemia when I was 15 having been fatigued and unwell a lot as a child. After several years on antibiotics I started subcutaneous immunoglobulin (SCIG) replacement therapy in 2018 and it has dramatically improved my life. I found the Immunodeficiency UK resources really helpful to both me and my family to understand my condition and SCIG. I am currently studying a Master’s degree in health psychology at King’s College London which was motivated by my own experience of living with a PID. I hope that joining the patient representative panel can help with raising awareness of PID’s among both the general public and medical staff and I want to use my experience to help others living with a PID. 

Fiona Watt, patient representative for Scotland

I live in Scotland and delighted to be joining the Immunodeficiency UK Patient Representative Panel. I’ve been living with a diagnosis of IgG subclass deficiency and on IgG treatment since 1990. First I was on IVIG and then changed to subcutaneous IgG. Having worked in the NHS for nearly 35 years and lived with a long term condition for 25 years I firmly believe in the importance of support and information on what helps, being able to talk or hear how others experiencing similar conditions have managed. I know how much I have valued support and knowledge from the PiA and from meeting up with other patients. Key is that people living with a PID do not feel alone in managing this condition. It is good to see how the PID UK, and now Immunodeficiency UK has developed since launch in 2013 with a well respected medical panel, attractive and informative website and work in policy, practices and alliances with other key organisations. I’m looking forward to meeting people, being involved as Immunodeficiency UK develops further and hopefully bring an interest and passion about the importance of supporting people living with PID. My other interests and enjoyment in life are my two daughters, walking my dog Rosie on the beach, reading, film and travelling (with IgG subcut) and with my partner. I now have an interesting collection of photographs of lovely views while doing infusions.

Michael Ingleston, patient representative for Northern Ireland

I live in Dromore, Co. Down, with my wife, Lesa. I have worked as a community pharmacist for around 12 years. Outside of work, I enjoy spending my free time birdwatching or playing the guitar. I have lived with a primary immunodeficiency, Wiskott–Aldrich syndrome, for 39 years and I think my experience of coping with the many challenges that this brings could be useful to other patients in similar situations.

Marian Armstrong, patient representative for Cumbria and Lancashire (the North West)

My daughter Rachel was diagnosed aged 7 with specific antibody deficiency (IgG2 and IgA) at Great Ormond Street Hospital , who treated her with IV immunoglobulin. She was one of the first patients on the UK trial of SubGam, the subcutaneous home infusion, which she is still on 20 years later. I was diagnosed with IgA deficiency a few years after Rachel, and we are both now under the Royal Free’s immunology team. With the Primary Immunodeficiency Association which pre-dated PID UK, the two of us took part in various PR initiatives to represent the patient view, such as talking to the media; I even spent an hour on the Fourth Plinth Trafalgar Square in 2009 to talk about primary immunodeficiencies! I am semi-retired, have a background in PR and marketing, and am keen to contribute to the growth of Immunodeficiency UK and help support others with immunodeficiencies. I live in Sussex with my husband and two dogs and run regularly, which has helped me combat the effects of my health condition.

Rae McNairney, patient representative for Scotland

I live in Scotland with my husband, Martin. We have two sons who have flown the nest. I retired in 2012 last after a rewarding and challenging career in the NHS and have no difficulty in filling my free time. As young boys, my sons were diagnosed with X-linked agammaglobulinemia (XLA). The road to diagnosis was long and worrying, with difficulty (pre-internet times) and then relief when we found the HGG Society. Later, when the HGG Society evolved to become the Primary Immunodeficiency Association (PiA), I became a trustee and was actively involved for many years. I was delighted that the void left by the PiA was recognised, and I am happy to represent PID UK and now Immunodeficiency UK regionally and nationally as part of the patient representative panel. I would like to help build a respected and constructive organisation that puts the care and wellbeing of all people with a primary immunodeficiency at its centre. I am involved with a number of groups including patient representative on BSI/NSD/SPAIIN/Cross Party Group for the Rare Disease Plan for Scotland. and as a Trustee of Genetic Alliance UK. I’m also kept busy by my work at the local Foodbank.

Drew Tyne, patient representative for London

I was diagnosed with CVID back in 1996 after becoming critically ill and straight away was put onto immunoglobulin replacement therapy. Since then, I have been to university lived in two different cities changed immunoglobulin products more times than I can remember as well as infusion methods leading me to now; doing my own infusions at home via the subcutaneous method, and I love it. Via the support from my Immunology team, at the Royal Free Hospital, and my amazing wife, I work full time as a Graphic Designer, as well as doing activities like running, rollerblading and American football. I’m excited at helping Immunodeficiency UK, as I know the struggles a patient can go through, so by using my experiences and knowledge I want to help patients take control over their condition so they don’t feel limited by it. I just want to let you know, that this diagnosis isn’t the end of the world. It is the beginning of an adventure to do the things you couldn’t have done before. Keep well.

Margaret Bennett, patient representative for the West Midlands

I live in Birmingham with my husband and have two grown-up daughters and a grandson. I was diagnosed with common variable immune deficiency (CVID) nearly 11 years ago and I have opted to have my immunoglobulin therapy in hospital. I was a full-time teacher until recently. I realise now that my battle against ill health went on for decades before the cause was finally found. I feel that it is important that we do what we can to support each other. At Heartlands Hospital, patients have come together to form a local group called WMIG (West Midlands Immunology Group) to do just that. We aim to offer peer support for newly diagnosed patients with a variety of primary immune diseases. It is very important in these challenging times for the NHS that local and national groups come together to ensure that we continue to receive the best possible care. I hope that we can raise the profile of these conditions among newly qualified doctors, too. I am very impressed by what PID UK, and now Immunodeficiency UK has achieved since starting out in July 2013, and I am delighted to be a part of this organisation as it continues to develop.

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Claire Dyer, patient representative for the South Wales area

I live in Cardiff, South Wales with my husband and three children. In 2015, our daughter Victoria was diagnosed with Hyper IgE and the road to diagnosis was a very long and stressful one, as is the case for lots of people with PIDs. Immunodeficiency UK provided us with invaluable information and support when we all felt very vulnerable. I honestly cannot thank them enough. When it felt like no one else was taking us seriously they were there. The web site was a great place for Victoria to see how other people like her were managing to lead “normal” lives and there was lots of information for us as parents.

Hannah Bruce, patient representative for the south-east region

I was diagnosed with a PID at six months old and have been on immunoglobulin replacement therapy since before I was two years old. I volunteered to be a member of the Immunodeficiency UK patient representative panel to help others, with a special interest in helping young patients, who can often feel isolated as they do not meet other affected individuals of their own age. Having dealt with having a PID my entire life, I feel able to offer support to others. My interests and hobbies change frequently and have included in the past five years, Latin American and ballroom dancing, street salsa, amateur dramatics, other charity work and reading.

Stacey Garrity, patient representative for the Manchester area

I live in Manchester with my husband Steve and our three sons. My youngest son, Xander, was diagnosed at 18 months old with X-linked Agammaglobulinemia (XLA). Xander’s condition was caused by a gene mutation, and came as a complete shock. With the help of the now dissolved, PiA, I gained help and support from many people who I now consider my friends and keep in touch with regularly. PID UK, and now Immunodeficiency UK has filled the void that the PiA left and I would like to share with people my wealth of knowledge of immunodeficiencies, that I have gained over the years and to support people and be that friendly face they can turn to. I have always wanted to, not only help those newly diagnosed, especially the parents/family of children newly diagnosed, but to help educate people regarding the conditions, from hospital doctors, to GP’s and even schools. I am thrilled to be part of a wonderful organisation.

Samuel Davis, patient representative

I was diagnosed with common variable immune deficiency (CVID) just over four years ago, and immediately started intravenous immunoglobulin replacement therapy. I have a First Class BSc Pharmacology degree from Nottingham Trent University, and worked as a medical laboratory assistant in Cambridge afterwards. I’m now doing an MRes in Pharmacology at the University of Strathclyde in Glasgow, where I am researching a potential drug target for controlling pain sensing. I enjoy activities such as photography, hiking and film/cinema. By being on the Immunodeficiency UK PRP I’m able to help other patients with a primary immunodeficiency and put my patient support experience to further use.  

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Patricia Hamilton, patient representative

I live in Greater Manchester and am delighted to be a member of the Patient Representative Panel. My son was diagnosed with CVID as a teenager in 2000 and I was subsequently found to have IgA deficiency. I have a medical background, having worked as a GP for 27 years and after taking early retirement I was a medical member of the tribunal service sitting on benefit appeals. I know first-hand about the challenges of living with CVID and am pleased to say that my son is able to be an enthusiastic teacher thanks to the support of his immunology team and regular immunoglobulin infusions.

I am happy to offer support to others affected by immunodeficiencies through this wonderful organisation. I am especially keen to continue to support Immunodeficiency UK to raise awareness of immune deficiencies among patients, health professionals and the public at large. I have written several information booklets and helped design a survey on remote consultations and hope to continue to contribute to the wealth of information available on the web site. I look forward to working with other members of the PRP. I like to stay active; I am a keen walker and am currently working my way around the Wales Coast Path in stages, and I enjoy travelling, gardening, socialising, and spending time with my children and grandchildren.