Pituitary tumour v brain tumour
The Pituitary Foundation supports the position that pituitary tumours are not brain tumours.
There is a great deal of debate on this subject and we understand that for many pituitary patients the distinction is an important one.
Our medical committee lead our understanding of endocrinology. They are clear that while the pituitary is in close proximity to the brain, it is not part of the brain.
Price hikes of medicines
The Pituitary Foundation does not condone nor support price hikes relating to any medicines. The costs of medicines are of concern to patients and the NHS alike, and there needs to be robust governance around the pricing of medicines.
The Pituitary Foundation also supports awareness being raised around price hikes of medicines so that governance can be improved. We feel that fair pricing of medicines is important to ensure patients have access to the medicines they need.
Unjust price hikes have damaging consequences to the NHS and cause stress to patients who can see there may be difficulties in continuing to receive an essential medication that they rely on.
Personal campaigns and individual circumstances
The Pituitary Foundation cannot support nor take on any personal awareness campaigns within the NHS, other government agencies, or amongst the general public.
We cannot provide individualised case management for patients or family members.
We cannot intervene in any circumstance faced by individual members of our community with anyone, including employers and medical professionals. Nor can we assist members with procuring medical appointments or tests and we cannot evaluate cases and provide expert diagnosis or treatment advice.
Pituitary conditions and ME/Chronic Fatigue Syndrome
For patients with ME or CFS, some of the symptoms they might experience can be non-specific, similarly to symptoms found in pituitary conditions. The reality is that pituitary conditions are relatively rare and there is no conclusive research to indicate a prevalence of pituitary conditions amongst those with ME or CFS. The Pituitary Foundation suggests ME or CFS patients who believe they have a pituitary condition should see their GP to discuss their symptoms and ask for blood tests relating to pituitary function.
Complementary and alternative therapies
The terms complementary and alternative therapies refer to a diverse group of practices and products not considered part of evidence based, conventional medicine. Some alternative medicines or treatments are based on principles and an evidence base that are not recognised by the scientific community.
Therefore, The Pituitary Foundation wishes to remain neutral on the usefulness of complementary and alternative therapies. However, we recognise some practices have been reported to improve the quality of life for some pituitary patients such as relaxation techniques and art for health.
Product endorsement
The Pituitary Foundation does not recommend, endorse nor promote any products, treatments, consultants or companies. Nor do we offer a negative judgement on a product or person. If it is ever appropriate to make a suggestion we would always attempt to offer details of more than one company.
Head injury and pituitary dysfunction
Traumatic brain injury is common. Pituitary dysfunction following this may occur and is a serious consequence. We would therefore advise that you contact your GP if you have any concerns and experience some of the following symptoms: mild headaches, feeling sick, problems concentrating, poor memory, irritability, tiredness, problems sleeping, lack of appetite, sexual and fertility difficulties, depression, an increased thirst and excessive urinating.
The aim of the campaign was to make opticians and the public aware of the importance of eye tests in checking your health – especially for pituitary tumours!
The more opticians who are aware, the more patients can be diagnosed early and avoid the frustrations associated with a long diagnosis.
We also encouraged everyone to hold Go Orange days and simultaneously raised awareness about the symptoms of pituitary.
We had great support from our partnership with Myers La Roche, a company that provides marketing support and practice sales for opticians and optometrists, which helped us drive our message towards the optical industry!
What we acheived
Awareness Month 2017 was the most successful yet as we saw record numbers of participants getting involved in the campaign and the awareness activities we coordinated.
Over 3,000 copies of our optician awareness leaflet were distributed, and campaign details sent to all the main UK Optician headquarters and prominent ophthalmologist colleges and societies.
An amazing 53 Go Orange events were held!
A huge thank you to everyone who donated to our awareness appeal which will keep our campaigns and awareness work going.
We also published regular news articles regarding the campaign on our website and regular social media content. These news stories included various patient stories about being diagnosed by an optician that were written especially for Awareness Month, and these were very popular. There was a terrific response on Facebook this year with over 123,800 people reached.
Overall, optician awareness has been a popular theme for the last twoAwareness Months. As we have made more opticians aware, more patients will hopefully be diagnosed early and avoid the frustrations associated with a long diagnosis.
Raising Awareness
We ran a social media awareness campaign which reached over 60,000 people. Including publicising stories from patients who were diagnosed by their dentist. We targeted organisations working in the field of dentistry, and publicised our campaign materials including awareness leaflet. Approximately 2700 copies of the leaflet were circulated.
We also encouraged our members and volunteers to help spread awareness to their dentists.
We encouraged Dentists to look for changes to a patients oral cavity, and if this had changed, suggest they ask their GP for their growth hormone and IGF-1levels to be checked, and ask for a referral to an endocrinologist.
Campaign Facts
Acromegaly is a hormonal disorder that results from too much growth hormone in the body. Symptoms dentists might spot: changes in oral cavity, enlarged lips, nose and tongue, changes to jaw, and gaps between teeth.
It can take up to 10 years for patients to be diagnosed with acromegaly and it can damage the internal organs if left untreated this long. If a dentists can diagnose acromegaly in its earlier stages it can result in significant improvements to quality of life later.
The diagnosis is often delayed as the symptoms develop gradually over time, and patients and families may not notice the changes.
Studies show that untreated acromegalic patients are more likely to suffer from diabetes, high blood pressure and heart problems with a reduced life expectancy compared to the normal population. These can be improved after successful treatment.
British Medical Journal states
Craniofacial soft tissue and skeletal changes including mandibular prognathism and disturbed occlusion are typical manifestations of the disease process. Dental professionals may be the first healthcare providers to be visited by these patients and thereby prove instrumental in early diagnosis’
Read full article here
Our Message
The key campaign message in this awareness drive to primary care (GPs etc.) is that Cushing’s symptoms can be a great mimic for other more common conditions that are regularly seen by GPs, such as obesity, menopause, depression, and hypertension.
The more GPs who are aware, the more patients can be diagnosed early and avoid the frustrations, and poor wellbeing, associated with along diagnosis. The Foundation contacted the Royal College of General Practitioners (RCGP), the Nursing Standard, The BMJ and worked beside the Society for Endocrinology to help raise this awareness.
We encouraged schools and businesses to hold “Go Orange” days and simultaneously raise awareness and spread the message about the symptoms of Cushing’s. As ever, getting involved can make a significant difference to how widely our Awareness Month message spreads across the UK and Republic of Ireland.
We continue to work to support the diagnosis and treatment of Cushings.
The last day of February
Rare Disease Day takes place on the last day of February each year. The main objective of the campaign is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
Each year we celebrate rare disease day . There will be different ways of getting involved, from sharing social media, to attending an event, or sharing your story.
Rare Disease Day was launched by EURORDIS-Rare Diseases Europe and its Council of National Alliances in 2008.
Get involved!
There are lots of ways you can get involved in rare disease day. You might want to share a photo to show solidarity with people living with a rare disease in your community! Share a photo with painted hands on social media using #RareDiseaseDay and tag @rarediseaseday.
Every year, thousands of events are organised around the world to mark the occasion of RareDisease Day.
Organise an event at work, with your friends or family, during or around the month of February to raise awareness. Don't forget to share pictures and videos using #RareDiseaseDay
Share your story
Raise awareness about rare diseases and their impact on peoples’ lives by sharing your story of living with a rare disease or caring for someone that does. You can submit a written or video testimony on the Rare Disease Day website and read the stories already uploaded!
You can stay up to date with the latest news from this year’s Rare Disease Day campaign by following them on Facebook, Twitter and Instagram
This campaign has shown without a doubt that many non-endocrine health care professionals do not know what DI is, and immediately confuse it with diabetes mellitus.
The campaign ‘No Need To DI’ reached over 70,000 people on our social media. We received 221 comments and our posts were shared by 722 and over 4.600 signed our petition to change the name.
We have seen devastating accounts, from loved ones of patients who lost their lives, because the HCPs involved did not understand what DI is, how it should be treated and how it should be monitored.
We continued to work with an incredible team of dedicated endocrinologists including Prof John Wass, Dr Malcolm Prentice, Dr Miles Levy, Prof Stephanie Baldeweg, Dr Helen Simpson, the Society for Endocrinology and others and are delighted that the name change is being adopted.
To have any new name of a medical condition recognised by HCPs and patients, there are steps we have to follow and a lot of communication to ensure everyone knows and understands the change. For a while both names will be used.
It is vital that people with conditions like adrenal insufficiency and diabetes insipidus feel safe going into hospital and able to trust they will receive the necessary treatment.
We hear too many stories of pituitary patients being denied their vital medications (e.g. hydrocortisone and desmopressin) when in hospital or A&E and it is unacceptable. These drugs should never be omitted
Due to the pandemic, the focus was not on physical leaflets, but digital interventions. We asked our whole community to use their social media- and their imagination – to get the message out!
We also asked patients to complete the inaugural Patient Care Survey, which was the largest survey ever undertaken in this area.
We were delighted to have the support of the Society of Endocrinology for this campaign.
We were joined by fantastic speakers, including the acclaimed Professor John Wass, Professor of Endocrinology at Oxford University; John Newell-Price, Professor of Endocrinology at the University of Sheffield, and Sofia Llahana, Consultant Nurse & previously a Chair of Nurses Committee for European Society of Endocrinology, along with many patients, volunteers and medical professionals.
Sessions ranged from Q&As with endocrine professionals, to sessionssupporting people to live well with their condition, to ways to get involved with The Foundation.
We reached over 100,000 people online, and sold 600 tickets to our events. We partnered with 6 organisations and are delighted that Online sessions were rated as Excellent or Good by 92% of the people who completed the feedback
As well as joining in with the events, patients and their support networks are invited to raise awareness of pituitary conditions and thesupport available to live well with a lifelong condition, by telling their story.
“I’d hit an all-time low and the Awareness Month has given me direction and hope again."
The Pituitary Foundation hopes that with patients across the country telling their story to friends, communities and medics, awareness of pituitary conditions will be raised. This will help to reduce the time it takes to be diagnosed and welcome patients who are unaware of the charities’ support to make use of our free services, helping them to live well with a long-term condition.
“Excellent session. Very positive. Wish this could have been shared with me upon diagnosis 8 years or so ago. If more information could be shared about medicines and when they don’t work - to help others know that they are not alone. Thank you for the session and to the doctors and event organiser for taking time out to raise awareness.”
Tell your story
We invited people to share their own stories of diagnosis and treatment. We developed some great resources for people to use to get involved which you can see here.