Pituitary patients charter

The Pituitary Foundation Patients Charter

This charter informs you, as a pituitary patient within the United Kingdom and Republic of Ireland, about what The Foundation currently identifies as best medical practice. By understanding what is available, you can be confident that you and your medical management team, are doing the best in your interest. This is a living document. We are striving towards ensuring that all patients have access to the correct and best possible treatment, together with the earliest achievable diagnosis.

WE ALL HAVE THE RIGHT TO BE TREATED WITH RESPECT

Although not everyone you meet on your pituitary journey will have heard of or seen the symptoms of pituitary conditions during his/her 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 patients with pituitary conditions to receive equal treatment regardless of age, gender or geographical location within the UK and ROI. This statement should enable its user to gauge his or her satisfaction with their treatment and empower them to ask for a second opinion if they don't believe they are getting the support to which they are entitled.

Once diagnosis is suspected, patients should be referred to a specialist endocrine (tertiary) centre with a full range of expertise available, for further assessment and treatment. An accredited clinical endocrinologist should be responsible for coordinating all treatment, both to ensure proper diagnosis is made and for long-term care. All endocrine referrals should be managed within 18 weeks.

Please note: The exception for patients with (as an example) a small prolactinoma, will be treated appropriately by endocrinologists in secondary care, 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), radiotherapists 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 to be carried out in a fully equipped investigation unit by experienced personnel, including specialist endocrine nurses where available. It is important for both diagnosis and future treatment that the full range of tests are carried out.
  • 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 (microadenoma and macroadenoma). The endocrinologist should know the outcome of the operation by the surgeon.
  • An experienced histopathologist, with a specialised pituitary or endocrine interest, should perform laboratory testing.
  • 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:

  • Providing education to patients and carers on routine training and regular refresher training in injections of hydrocortisone, 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 and instruction of their condition and when accessing non- endocrine care or emergency care as appropriate.
  • Patients should be provided with a list of symptoms of concern that if they occur should trigger the patient to return to hospital, along with contact details in case of an emergency.
  • 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 plus 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 and hormone replacement therapy, psychological support and counselling about endocrine disease and treatment, educational psychologists for child patients and dietary support information. Also, Occupational Therapy - for example, returning to work, mobility enablement etc.
  • Agreed management of care 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.
  • Particular hormone replacement medication should be prescribed as the branded product.
  • Repeat prescribing for life-long endocrine medication should be on a minimum of 56-day prescriptions.