As well as managing my own conditions, I cared for my mother with several chronic conditions and my father with dementia.
I have two lung conditions – asthma and bronchiectasis, the latter causes me to have frequent lung infections and because I have sinus involvement the infections often include my sinuses also. I attend a respiratory infection clinic at University College Hospital in London for these conditions. I also have osteoporosis and have suffered a stress fracture from this already – I currently receive regular medication for this, and hyperlipidaemia and gastro-oesophageal reflux disease (GERD) both of which I also take medication for and am required to adjust my diet.
For the last 3 years I have been working in the role of NHS Policy, Value and Access Partner at Roche Biopharmaceuticals. In this role I have been focussed in gaining access to medicines through NHS England and working with the commissioning process. I have worked on a collaboration with Health Education England on education on genomics for clinicians and with the Accelerated Access Collaborative (AAC) on patient education for certain types of precision medicine. I have also worked on medicines optimisation recently, e.g. the DETERMINE study for repurposing precision medicines. I am familiar with reviewing proposed policy documents from DHSC, NHSE and NICE through consultation processes, and providing collated feedback e.g. NHSE Commercial Framework, NICE Methods Review, Genomics Implementation Strategy. I am very familiar with the NHS Long Term Plan and the plans for transformation around the development of integrated care, ICSs, and ICBs. As well as genomics, I have also been working with patient groups in Huntington’s Disease and Alzheimer’s to understand the challenges they and their carers face with regards to accessing health care.
I would like to be able to influence healthcare strategy and policy at both a local and national level on behalf of patients, particularly as I have knowledge and insight gained from my career. I appreciate the extent of the issues healthcare faces as a result of the covid backlog, and the challenges it is facing with the move to integrated care.
My roles in patient advocacy have included participation in a 2-year Medicines Management project with the local Primary Care Trust (as was) and being a member of the Patient Participation Group at my local surgery for a further 2 years.
I have experience in working with NHSE, CRGs, AAC, HEE from a professional perspective, I would really like to learn more about how to relate from a patient perspective and how to be heard, and how to ensure the organisation I am working with takes accountability for the input they receive. I am also looking for platforms from which I can engage with these organisations.
My personal lived experience is provided above. I also have carer experience with both my parents. My mother had all these conditions too, as well as chronic heart disease. Her osteoporosis was particularly severe, causing her to have many spinal crush fractures, and other debilitating fractures such as her shoulder and pelvis. I cared for her when necessary, throughout this time.
My father also had all these conditions (I know, there’s a pattern here, right?!). He also had significant fractures, including both his shoulders at the same time and his pelvis. He also developed prostate cancer and dementia. With my siblings and the help of carers we looked after my dad in his own home for the last 3 years of his life when his dementia was severe. I was able to access ‘continuing health care’ and carers allowances for my dad and navigated the social care through both a private provider and local government organised providers.
With both my parents, I had to become adept at managing relationships with their primary care physician and multiple departments within the secondary care setting.
In addition, my mother-in-law had motor neurone disease. While I was not a primary carer for her, we lived close by to her and I was aware of the issues she and my father-in-law faced on a daily basis, coping with this terrible condition.
As well as the lived experience listed above, I have worked throughout my career in and around the pharmaceutical industry. I’ve worked in many disease areas, but most recently in genomics and precision medicine. I also have a particular interest in antibiotics from my work earlier in my career and more recently my recurrent respiratory infections.
I volunteer with the mental health charity, MIND where I deliver psycho-active training on wellness and other mental health topics. I am also a befriender and make regular calls to 3 MIND clients. My training and experience in this area provides me with some expertise.
I have recently been taken on as a freelance project manager with the Patients Association where I will be working with groups of patients to identify issues, areas for improvement and potential collaborations through surveys and focus groups.
I am passionate about equity of access to healthcare and I particularly want to speak up for those who are not technology-enabled and people who are neurodiverse e.g. two of my clients at MIND have no access to the internet, my daughter has dyslexia and ADHD, and previously I have been a Trustee and founding member of a charity for young adults with Asperger’s.
Condition interest or area of knowledge
- Equity of access to healthcare
- GP Patient Participation Groups
- Patient driven improvement
- Lung conditions – asthma and bronchiectasis
- Osteoporosis and stress fractures
- Hyperlipidaemia (high levels of cholesterol or triglycerides in your blood)
- Gastro-oesophageal reflux disease (GERD)
- Genomics and precision medicine (e.g. antibiotics)
- Medicines Management
Where I can help
- UK (National)
Organisations I am involved with:
- Health Education England
- The Accelerated Access Collaborative (AAC)
- MIND in Mid Herts charity – volunteer trainer delivering Wellness and Psycho-active training programmes; Client befriender
- Patients Association - freelance project manager
- Catholic Churches of Welwyn Garden City - parishioner
- Codicote Women’s Institute - member