What you can expect.

Although not all healthcare professionals you meet on your pituitary journey will have heard of or seen the symptoms of pituitary conditions during their career, this does not mean the effects are not genuine and deserving of medical care, together with further and appropriate investigations and treatment.

The Pituitary Foundation expects all people with pituitary conditions to receive appropriate and equitable treatment regardless of race, age, gender, faith or geographical location within the UK and ROI. This statement should enable its user to gauge their satisfaction with their treatment and empower them to seek a second opinion if they don’t believe they are getting the support to which they are entitled.

We all have the right to be treated with respect

Once diagnosis is suspected, patients should be referred to a specialist pituitary (tertiary) centre with a full range of expertise available, for further assessment and treatment. A clinical endocrinologist should be responsible for coordinating all treatment, both to ensure proper diagnosis is made and for long-term follow up care. All endocrine referrals should be managed within 18 weeks. (This may be longer due to current NHS delays.)

Please note: There may be some patients with for example a small prolactinoma who will be treated appropriately by endocrinologists in secondary care at a local district hospital, rather than requiring referral to a tertiary centre.

At the centre it is vital that the following expertise and services are available:

  • A Multi-Disciplinary Team (MDT), made up of endocrinologists, pituitary neurosurgeons, (specialist pituitary ENT surgeons where applicable), endocrine specialist nurse, radiologist, oncology/radiotherapy, ophthalmology and other specialists as needed, who meet together and agree management of the patient’s condition, whilst in close communication with the patient.
  • Pituitary imaging (MRI & CT scanning) should be performed in a centre where pituitary scans are carried out regularly by experienced professionals.
  • Vision and visual field testing are readily available.
  • Access to bone density (DEXA) scanning should be available.
  • Pituitary function testing should be carried out in a fully equipped investigation unit by experienced personnel, including specialist endocrine nurses where appropriate. It is important for both diagnosis and future treatment that a range of appropriate, evidence based, patient specific testing is available and carried out as required.
  • It is essential that surgery is performed by surgeons who specialise in pituitary surgery and so are able to choose the most appropriate method of operation for patients with either ‘non-functioning’ or ‘hormone secreting’ tumours (this includes both microadenoma and macroadenoma). The endocrinologist should be informed of the outcome of the operation by the surgeon, and reviewed by the MDT regularly.
  • An experienced histopathologist, with a specialised pituitary or endocrine interest, should perform analysis of any surgical biopsy obtained. Biochemistry laboratory should be available for analysis of blood samples obtained
  • Access to a specialist endocrine nurse who can offer support, educational information, advice and guidance.

For your longer-term care it is important that the following should happen:

  • Provision of education and training to patients and carers on injections of hydrocortisone, either as part of annual clinical review or as an annual reminder letter from the GP practice, inviting patients to see a practice nurse for a refresher session.
  • Safe management of and instruction about their condition and how to proceed when accessing non-endocrine care or emergency care if needed.
  • Patients should be provided with a list of symptoms of concern that if they occur following their surgery should trigger the patient to return to hospital. Patients should also be provided with staff contact details in case of an emergency.
  • Structured and smooth transition of young people from adolescent services, supported initially by joint transitional clinics, with support from clinicians from both paediatric and adult services
  • All patients should have access to, and receive, detailed explanation of their condition and treatments, including emotional care by professionals conversant with all aspects of their condition – including immediate and long-term outcomes. Patients should be informed of patient support organisations, such as The Pituitary Foundation.
  • Literature relative to pituitary conditions, treatments and lifestyle issues should be available in clinics, investigation units and in-patient wards.
  • Introductions and referrals should be provided where necessary to other specialists, (such as gynaecologists for infertility), psychological support and counselling about endocrine disease and treatment, educational psychologists for children and dietary support information. Also, in some cases Occupational Therapy – for example, returning to work, mobility enablement etc.
  • A clear management plan should be available and shared between the specialist centre, GP and more local clinicians to enable some aspects of long-term care to be provided more locally (a district general hospital) to the patient.
  • Patients should be offered access to a second opinion, either through their GP or endocrine specialist, if they are unhappy about any aspect of the management of their condition.
  • Patients should receive regular checks where their condition may affect other aspects of their health in the longer term. For instance, osteoporosis or visual problems.
  • Advice should be given in respect of the criteria for social benefits, for example, free prescriptions.
  • Where necessary, patients should be provided with a specific brand of any hormone replacement they may take as on occasion generic products may be less effective.
  • Repeat prescribing for life-long endocrine medication should if appropriate be on a minimum of 56-day prescriptions.
  • All patients needing cortisol replacement should have access to an extra supply on prescription to enable sick day dosing as need arises.