In 2021, The Pituitary Foundation ran the most extensive patient care survey undertaken in the UK. It asked patients to consider their experience in the past three years, to encompass pre-pandemic events.

There were 982 responses; 98% of those who returned a survey had received NHS endocrine care in the past 3 years. The free text comments given by 700 participants articulate a challenging landscape for patients.

OVERVIEW

Amongst examples of good experiences, there are many examples where care has fallen below a standard that should be expected, with potentially life-threatening consequences. The survey results highlight some significant issues in the systems that patients navigate, and three steps have been identified for all professionals working in endocrinology to improve patient care (see below).

There is a need for immediate remedial action and improved communication. The good news is that The Pituitary Foundation believes this to be achievable in the short and medium term. There is a clear urgency to raise awareness and increase education around pituitary conditions in GP, emergency and non-endocrine settings. Within endocrinology, patient experiences are patchy. It is interesting that this is often due to communication – simple, and arguably easy to remedy.

Professor of Endocrinology and Consultant Endocrinologist, John Newell-Price, Chair of The Pituitary Foundation Medical Committee, emphasises this, saying:

“This is an urgent call to arms for all of us working in endocrinology. The Pituitary Foundation, in conversation with NHS healthcare staff, has outlined three simple steps which we can all take to health-check our services to patients and improve communication."

KEY THEMES OF THE FINDINGS

Overall patient experience is patchy

There were comments about services in secondary and tertiary centres across the UK. In some cases, when discussing the same centre, one patient was positive while another was negative. For example, in longer term care of patients, 67% had problems accessing an endocrine consultant or team; however, accessing endocrine nurses was easier, with only 34% having problems accessing a nurse.

Regarding routine follow-up appointments, 72% felt that the endocrinologist leading their care understood their condition fully; 28% felt that the endocrinologist did not.

Comments related to endocrine units, as well as A&E and non-endocrine settings:

“I have definitely felt like the condition isn’t quite understood by my endocrinologist. I usually leave appointments feeling under-heard and disheartened."

“My endocrine team are fantastic. However, when I have been admitted for emergency care (i.e when I broke my ankle) I had to personally contact my consultant through her secretary, as the medical teams refused. I was treated as an inconvenience, not given hydrocortisone appropriately, my diabetes insipidus ignored and almost taken to surgery with no endocrine input. My life was put at risk. My consultant was on the ward within 30 minutes of me contacting her and swiftly took over my care, thankfully. This terrifies me and I am now scared to attend hospital, even though I have an emergency care plan in place now."

Communication is vital

The negative experiences were predominantly around communication. In some cases, patients were not educated about their condition, in others they were not listened to by medical staff. For example, 75% of patients with cranial diabetes insipidus were not given written information about desmopressin, such as doses, sodium and fluid balance. This, of course, can lead to hyponatraemia and hospital admission.

There is a significant lack of communication around hydrocortisone, with around 40% of patients not receiving relevant information. This leads to patients not understanding sick day rules, and prompts adrenal crises, again with hospital admissions.

Patients have told us:

“I collapsed twice without fully understanding sick day rules."

“It did take 3 years and 10 months to be offered a hydrocortisone emergency pack, and that was only after I mentioned it having read about it on The Pituitary Foundation website."

COVID is not all bad

The pandemic has, of course, had an impact, but it has not been all bad. If the parity of virtual or face-to-face consultations can be made clear to patients, this flexibility can be a benefit. Long term, while 51% of patients would prefer to always have a face-to-face appointment, 45% would prefer to have a mixture of virtual and face-to-face.

There is an urgent need to support GPs

There is a lack of awareness at GP level that leads to delayed diagnosis and a lack of continuing support for patients. This will disproportionately affect patients for whom English is a second language or those of a lower socio-economic status.

“I wish GPs were more aware of pituitary conditions. It seems GPs have not received any updates on pituitary conditions since I was diagnosed in 2006, and this was picked up by an optician."

THREE STEPS WE CAN TAKE

The Pituitary Foundation believes that patient care can be dramatically improved through increased awareness, education and communication. All healthcare settings are encouraged to consider how they could health-check their settings against these steps.

Step 1: Increase awareness and education regarding pituitary conditions
Increasing awareness at an emergency level, as well as amongst GPs, is vital. This is especially true for diabetes insipidus and adrenal insufficiency. Existing, excellent resources published by The Pituitary Foundation, the Society for Endocrinology and other patient charities can be used to support this.

There are some simple (and free) steps that endocrinologists can take. These include, for example, including the web addresses of The Pituitary Foundation GP Factfile and Society for Endocrinology resources on referral letters to GPs.

It is also worth checking that all patients are aware of the support offered by endocrine nurses, and that patients are aware of the steroid emergency card, and where they can get one.

Endocrine units can also encourage peer-to-peer education. For instance, could endocrine nurses deliver a training session for non-endocrine nurses on adrenal crisis?

A large number of patients are anxious about visiting hospitals on general wards, or in emergency contexts, because of the lack of understanding of their condition outside endocrinology. With more awareness of pituitary conditions in wider hospital settings, these issues that are experienced by patients could be massively reduced.

Step 2: Emphasise the importance of communication
Communication goes two ways. A patient must be informed and educated about their condition, especially around hydrocortisone and sick day rules. But also, and more often in the case of a less common condition, a patient must be listened to. Endocrine specialists should be contacted routinely if required. Appointments should be provided, where possible, in the format preferred by the patient.

A large number of patients were unaware of endocrine specialist nurses, and ensuring that this fantastic support is available is an easy step to take.

Step 3: Signpost support from charities
The pressure upon the NHS is well understood and documented. The role that The Pituitary Foundation and other peer-patient-led charities offer is increasingly a vital part of the patient journey, and must be signposted to patients at every stage of their experience.

The Pituitary Foundation, as well as other patient charities, has a range of resources to support your clinics and patients. The Pituitary Foundation’s Endocrine Clinic Packs contain a huge range of our booklets from those that are condition-specific to others for relationship and communication support. These can be displayed in your clinics.

The Pituitary Foundation’s Endocrine Nurse Helpline offers patients support when they may not be able to access endocrine clinics, and is especially useful to newly diagnosed patients. The charity has support groups across the country, providing an opportunity for people to engage with others with pituitary conditions and also create links with their local endocrine units.

There is also a range of practical advice on The Foundation’s website, such as guidance for travelling with a pituitary condition and on well-being support. The Patient Information and Support Helpline is operated by volunteers who are all pituitary patients, and they can give a range of support to your patients using their lived experience of a pituitary condition.

WHAT THE FOUNDATION IS DOING

At The Pituitary Foundation, we will work with peers and partners to achieve positive outcomes for patients. In particular, we are collaborating with the Society for Endocrinology’s Future of Endocrinology working group, with whom we share common aims and outcomes.

These are some of the practical steps that we at The Pituitary Foundation are taking to raise awareness of pituitary conditions and highlight our services to patients:

• running a campaign to highlight the importance of the steroid emergency card to patients
• working with our Medical Committee to establish best practice benchmarks for emergency settings
• ensuring all NHS and patient web pages related to pituitary conditions have a link to The Pituitary Foundation
• linking with professional bodies to raise awareness of pituitary conditions amongst non-endocrine medical professionals
• developing a resource about the role of endocrine specialist nurses for patients.

We welcome all thoughts on how we can work with healthcare providers to practically support patients in their endocrine care.

By endocrine specialist clinics working together with patient support organisations, we can ensure that every patient gets access to the support they need, and improve patient care.

The report with the full findings of the survey is available on The Pituitary Foundation’s website or use the QR code.

 

The Pituitary Foundation is the UK’s representative for pituitary patients. Established in 1994, it is recognised as one of the global leaders in its field. We run an Endocrine Nurse Helpline, responding to around 900 calls annually from patients unable to get support through the NHS. We have a world class Medical Committee informing our research and support.

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