The Pituitary Foundation, a rare disease charity based in Bristol, has come to the rescue of a child following a petition by the child’s mother which received over 91,000 signatures.
Isabella Park, aged 11, has a rare condition called panhypopituitarism meaning that she doesn’t produce hormones properly. Her mother, Kelly Park, from Bath had fears that her daughter wouldn’t be safe at school as staff are unable to administer life-saving treatment as they needed training. Kelly started a petition which received over 91,000 signatures over the summer.
Panhypopituitarism means that if Isabella was to have an accident or simply become poorly and vomit she needs to have an emergency injection immediately to stop her from going into shock. Without this injection Isabella will be in a life-threatening situation.
Staff at St Gregory’s School had said that they would be happy to receive training but the NHS are unable to deliver this. The Pituitary Foundation have stepped in by offering to send their Specialist Endocrine Nurse, Darshna Patel, to deliver the necessary training.
The Pituitary Foundation CEO Ren Renwick said:
“The Pituitary Foundation is the only dedicated pituitary charity in the UK and when we saw this we were really concerned. As a charity we want to be there to support every pituitary patient when they need us most and it was clear that we were needed in this situation. As such we worked closely with the school and we are delighted that we have been able to send Darshna to deliver this training. We hope that Isabella enjoys school like every child should.”
“The NHS were unable to deliver training for an individual case and we appreciate how stretched they are. Our free helpline supporting people with Pituitary conditions has an increasing number of calls, and our services are an important and increasingly vital complement to the great work the NHS is doing.
In this case we have had to close our Helpline for one day to deliver the training, meaning that other patients are missing out. It has also come at a cost to us financially, at a time when finances are stretched due to the Covid-19 pandemic and the current cost of living crisis.”
This situation highlighted the huge lack of awareness around pituitary conditions, and the severity of the situation if medication is not administered. The Pituitary Foundation would like to offer this vital training to other schools with students with pituitary conditions.
The Foundation have launched an appeal to raise funds to offer training in administering lifesaving emergency medication. If you would like to donate so that The Pituitary Foundation can roll this training out nationally please visit: https://www.justgiving.com/pituitaryeducation
Isabella’s mother, Kelly Park said: “I think this is amazing news, I am so grateful to The Pituitary Foundation. It shouldn’t have come to this to allow Isabella to enjoy her education with her peers. The Pituitary Foundation are a charity and don’t have the resources to deliver similar training like this all over the country but at least this, for me, allows Isabella to start school safely. Unfortunately, I have been in touch with parents of children that have not survived and have been let down by the system.”
For more information contact Lottie Storey by emailing [email protected] or 0117 3701312
About Pituitary Foundation
The Pituitary Foundation is the UKs leading charity supporting people with pituitary conditions. Established in 1994, we provide support for the 70,000+ people in the UK who are affected by disorders of the pituitary gland, as well as their families, friends and carers.
We want to ensure that every person affected by a pituitary condition has a timely diagnosis and access to high quality treatment, information and support. We have a dedicated nurse helpline, online and printable resources, and we work with leading medical experts to improve patient care.
The Pituitary Foundation is a registered charity and relies on generous donations from individuals and companies as well as grants.
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About Pituitary conditions
Pituitary disorders are considered rare. It is estimated that there are around 70,000 pituitary patients in the United Kingdom. The most common problem with the pituitary gland occurs when a benign tumour (also called an adenoma) develops.
Some pituitary tumours can exist for years without causing symptoms and some will never produce symptoms. The most common type of tumour is the ‘non-functioning’ tumour. This is a tumour which doesn’t produce any hormones itself. It can cause headaches and visual problems or it can press on the pituitary gland, causing it to stop producing the required amount of one or more of the pituitary hormones, or it can produce too much of a specific hormone.