Patient representative panel

The PID UK patient representative panel is made up of individuals who are directly or indirectly affected by primary immunodeficiencies (PIDs). The members of our panel help to support our work and represent different regions of the UK. Several of our panel members were active members of the Primary Immunodeficiency Association (PiA), which closed in 2010.

Read how our panel members advise us on the work of PID UK.

Alison, patient representative for London

Alison, patient representative for London

I was diagnosed with a PID several years ago, aged 30, after suffering from autoimmune conditions my whole life and then stubborn chest and ear infections in my late twenties. In 2017 I started home subcutaneous immunoglobulin therapy and found the resources from PID UK a huge help, as well as the personal stories and advice from other patients. As the patient representative for London I want to help provide this support to other patients, particularly those with rarer forms of PID or with other complicating conditions. I live in London and have worked full time in IT for the past 10 years. At weekends I enjoy eating out, watching films and spending time with my nieces and nephews.

Michael Ingleston, patient representative for Northern Ireland

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)

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

I live in central Lancashire with my husband and we have two grown-up daughters. Until recently, I was a full-time teacher of science and careers, and head of year. I took groups of children on adventure holidays that included activities such as sailing, kayaking, climbing and ghyll scrambling, despite my rheumatoid arthritis and repeated respiratory and ear infections. I had always been prone to ear and chest infections from childhood. Eventually, a chance blood test in 2005 revealed that I had common variable immune deficiency (CVID) and I began intravenous immunoglobulin replacement therapy. My health improved with regular treatment, but I had to battle with my employers to prove that I could still do my job as well as any other teacher. Each time I visited the doctors’ surgery I had to explain my CVID to various GPs. I also realised that staff in other hospital departments (I have appointments with rheumatology and ENT) often have no understanding of CVID. As a PID UK patient representative, I am keen to use my ability to talk to groups of people to help get the message across to a wider audience. I also hope to be able to help others with CVID realise that we can do just as much as anyone else, despite our condition, once given the correct treatment.

Fiona Watt, patient representative for Scotland

Fiona Watt, patient representative for Scotland

I live in Scotland and delighted to be joining the PID 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 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 PID 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.

Rae McNairney, patient representative for Scotland

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 am delighted that the void left by the PiA has been recognised, and I am happy to represent PID 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

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 PID 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

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 has achieved since its launch in July 2013, and I am delighted to be a part of this organisation as it continues to develop.

Carolyn Grundy, patient representative for the North Wales area

Carolyn Grundy, patient representative for the North Wales area

I was diagnosed with CVID almost 6 years ago, after several years of illness. My GP had never heard of the condition, despite me telling him (and everyone else in the medical profession that I was referred to) that there was something wrong with my immune system. I have a background in biomedical research and, since diagnosis, have tried very hard to spread the word among any medical professionals I come across. I hope that being on the panel will give me a greater chance of doing this. I live in North Wales with my (very supportive) husband and have 2 “children” and 3 grandchildren. I retired early partly due to moving across the country 15 years ago, but also because I was ill so frequently, I didn’t feel able to look for a job. Following a dramatic improvement since I started immunoglobulin replacement therapy, I have done my best to show people that I am not ”ill” and that I am just as capable as the next person of living a normal life. I go to the gym, play in the local amateur orchestra, paint and travel the world. I am also very interested in learning about any research currently in progress into immunodeficiencies. My ambition is to put my skills to good use as a member of the Patient Representative Panel.

Hannah Bruce, patient representative for the south-east region

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 PID 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.

Claire Dyer, patient representative for the South Wales area

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. PID 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.

Samuel Davis, patient representative

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 PID UK PRP I'm able to help other patients with a primary immunodeficiency and put my patient support experience to further use.  

Stacey Garrity, patient representative for the Manchester area

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 now fill 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.

Kit Sandford, patient representative for London

Kit Sandford, patient representative for London

I am 25 years old and was born with CD154 deficiency. I had a successful bone marrow transplant when I was nine and I am now fit and healthy. I work for a retail consultancy as an insight analyst and really enjoy it. I love to ski, play squash and go out with friends. I got involved with PID UK to help support other young people going through similar experiences to myself.