On Friday 9 June 2023, our CEO Ren and our helpline volunteer, Peter O Malley who also has a pituitary condition, met at the Leicester Endocrine Centre with Leicester West MP and current Shadow Minister of Health and Social Care, Liz Kendall. This is part of our campaign work to raise awareness of pituitary conditions.
In Leicester, the need for change in how pituitary conditions are cared for, was underlined after a patient who was steroid dependent was brought into the A&E department of the University Hospital Leicester (UHL). They were left without hydrocortisone for too long and unfortunately lost their life.
Peter and his endocrinologist Dr Reddy organised the meeting stating that; “As a patient, this horrified me. It was my greatest fear. So, we put our heads together to try and see how the way patients are diagnosed, treated and cared for could be improved.”
They had some notable success by addressing the role of IT. As a result of their work, anyone in the Leicester Trust, who has adrenal insufficiency are flagged on the database. The healthcare professional, in primary, emergency or tertiary care, are reminder to consider administering a hydrocortisone injection.
This is something they wanted to take wider:
“We came up with asking Liz Kendall MP to get involved with a possible change, nationwide, to policies and procedures that would be issued to all hospitals in the country. So, no matter which hospital in the country a pituitary patient was being seen, the procedures used in University Hospital Leicester would be used in all other hospitals.”
On a hot Friday in June, Liz Kendall attended the UHL Endocrinology department. She met consultants and nurses of the endocrinology department, our CEO Ren, Peter himself and the Chief Executive of UHL, Richard Mitchell.
Endocrinologist, Dr Miles Levy led the meeting explaining the dangers those with AVP Deficiency (Diabetes Insipidus) face when admitted to hospital, such as being refused or omitted medication.
There was discussion about the lack of knowledge in primary care about pituitary conditions and the challenge of patchy communication between primary and tertiary care. The need for a joined up digital infrastructure was discussed, noting the success that team had achieved above.
Liz was passionate about engaging patient and families in training health care professionals as part of the pathway for rare and uncommon conditions, including pituitary conditions. Ren underlined how The Pituitary Foundation, alongside the NHS, and doctors and consultants alike have a key role in finding a solution for patients and welcomed the opportunity to explore innovative ways of working to address the growing crisis.
Peter shared the challenge of the current cortisol injection kit. Ren noted, “Liz empathised with the ridiculousness of the adrenal crisis kit” and Peter stating, “She was horrified that something so archaic could still be used in the 21st Century.”
It is clear from the meeting that Liz Kendall had done prior research into pituitary conditions, was engaged in the discussions and recognised the importance of the topics discussed and how to implement these. She noted that in some cases it works best to implement locally, to make change happen, and then roll it out nationwide.
Working towards the larger picture of treatment and diagnosis for pituitary conditions is a big priority for us, so it was great to engage with Liz. We hope that some of these changes may spread across the country in the next five years and look forward to working with others to achieve this.