This blog is for anyone with a Pituitary Condition or involved in the care/support of someone who has. We look at Raising Awareness of Training Available and the Significance of this being utilised across the healthcare sector.Throughout the Month Of October The Pituitary Foundation launch ‘Think Pituitary’ as they enter into their Annual Awareness Month Campaign.Everyone can learn something from this, but specifically those with life threatening conditions and those involved in emergency treatment, especially those which require life saving steroid replacement therapy.
So how does it actually feel knowing that Healthcare Professionals are not aware of the high risk of many Pituitary Conditions? Being aware that they don’t have the knowledge required for the fast recognition and action required failure to administer vital medication whilst in hospital or in an emergency, which can be life threatening?
Let’s explore the great Information that we are presented with and, as patients, supporters, carers and medics how we can all pull together to provide a better level of care, utilising Patient Safety Information to its full potential.
The Importance of this Work
The key here is to save lives. Without the adequate training and knowledge to recognise these conditions peoples lives are being put at risk every single day. Patients are being denied the drugs required whilst in hospital with potentially catastrophic effect. Publications galore are available but Pituitary patients are still not being heard and, the resources are not being utilised to their full potential. Free training has been put in place but uptake is lower than is desired.
Who Are We Targeting? Some Definitions & Understanding!
This is where things become more complicated. In order to give some understanding of this complex issue The Pituitary Foundation are focusing on two conditions for their awareness month 2021 which are Adrenal Insufficiency and Diabetes Insipidus.
Adrenal Insufficiency; Hypopituitarism (also called pituitary insufficiency) is a rare condition in which your pituitary gland doesn't make enough of certain hormones. Hormones coming from the pituitary gland control the function of other glands in your body: thyroid gland, adrenal glands, ovaries, and testes. Your body can't work properly when important glands, such as your thyroid gland and adrenal gland, don't get the hormones they need from your Pituitary Gland.(https://www.hormone.org/diseases-and-conditions/hypopituitarism)
Diabetes Insipidus (DI); Is a disorder in which the kidneys are unable to retain water, caused by the lack of a water-retaining hormone produced by the pituitary gland. This results in the production of large amounts of urine and in turn, greatly increased thirst. The condition requires medication to manage it effectively. Without such medication (DDAVP or Desmopressin) the condition will cause patients to become dangerously dehydrated and in extreme situations can become fatal.Many patients require frequent and regular medication in order to keep them from serious and fast deterioration.(https://www.pituitary.org.uk/hcp-area/general-medical-or-ward-staff/)
Of course there are many other LTHC’s & Disabilities that face the same challenges and charities and support groups who are desperately searching for answers and understanding themselves. By recognising this fact we are already taking steps of appreciation of areas that are lacking in terms of emergency response teams ability and, access to the appropriate treatment of every condition. There are a significant amount of conditions such as Chronic Asthma, Crohn’s Disease, Heart Conditions and Lupus, that also require the administration of crucial steroid replacement medication that deserve the same support, respect and understanding.
Hospital Stays
Medication can be complex for Pituitary Patients and another focus of this campaign is treatment whilst in hospital. Here if medications such as Hydrocortisone and Desmopressin are omitted from patients treatment without consultation with an Endocrinologist then this can lead to fatality. Administering medications can be complex with ‘sick day rules’ meaning that if additional stress is placed on the body additional medication may be required.
COVID
In amongst the crazy world that our medics live in and, the strains that COVID have placed on them makes it extremely challenging to move forward and, why The Pituitary Foundation are putting this at the forefront of their awareness campaign. As this guidance from The Addison’s Self Help Group shows extra management and consideration needs to be applied for those with
Adrenal Insufficiency should they have symptoms requiring either care at home or external support if COVID is contracted or suspected. An additional worry for patients, family, friends and more pressure placed on our overstretched medical sectors.
Patients Have A Significant Role To Play In Keeping Safe & Raising Awareness
On the 17 September 2021 World Patient Safety Alert day was held. An opportunity for patients to consider themselves, their long term health conditions and the importance of ensuring certain simple steps are taken to ensure that when urgent treatment is required they are supporting the medics as much as they support us. It’s a two way process. Participating in this Patient Care Survey from the Pituitary Foundation is a positive step in helping them to recognise and manage care in all settings. Some very simple steps patients can take include;
Having spare medication with you at all times
A repeat prescription list which has all medications shown
Reminders on your phone to make sure you are alerted if you loose track of time and forget your medication
Educating the people around you so they know the signs and symptoms of your condition
Ensuring you check your medication expiry dates frequently
Labelling your medication clearly and specifying who it is for
Download the NHS app on your phone which holds all your treatment information & Vaccine Updates
Keep a medical folder with letters, appointment details and downloadable documents about all the conditions that you have.
That leads us nicely into our main event;
The Pituitary Foundation - Awareness Month
Think Pituitary is a dedicated page for this campaign which tackles the treatment of Pituitary patients and covers all sectors of the healthcare chain, including 111, first responders, ward Doctors, walk in centres and pharmacists. The Think Pituitary Digital Leaflet highlights both conditions, the aims and objectives of the campaign and new resources. Some of our favourites include;
Think Pituitary PatientDiabetes Insipidus & both Adrenal Insufficiency & DI.These even have QR codes on that Dr’s can scan and will link with specific, targeted treatment information on the correct treatment options they should adhere to. There is also room for patients to complete details of their Endocrinologist, hospital numbers and medication regime.
New stickers from The Pituitary Foundation shop where you can also find some other helpful purchases such as clearly labelled wrist bands, sturdy boxes labelled ready for your emergency medication and keyring pill boxes, ideal to carry a spare or scheduled dose of medication whilst on the move.
Simple and easy to access with many options available and by taking these steps could lead to much better care. First responders on scene are crucial. Getting Red Flagged can help, ensuring a paramedic will arrive on the doorstep should an ambulance need to be deployed.This factsheet from The Pituitary Foundation sets out exactly who to contact to get you registered. This is specifically for those with Adrenal Insufficiency although that is not the only condition which they cover. The Addisons’s Disease Self Help Group, also reference this in their Newly Diagnoised Paramedic Information section. They also highlight some great work by Dr Sam Westall which is highlighted in The Ambulance Alert System research blog. The Ambulance Alert System Poster can be downloaded here.
Support Available For Endocrinology Professionals
For specialists in Endocrinology patient support is crucial and the Pituitary Foundation and Addisons Self Help Group have some great resources that you can download for free, purchase or signpost patients to. Referral Pads give an information sheet for patients that can be given on diagnosis or during treatment, which outlines what the Pituitary Foundation has on offer and the contact details for patients. These are free and come in handy A5 tear off sheets.
Endocrine Professionals clearly have a role to play in not only the treatment of Pituitary Patients in clinic but also supporting others involved in a patient’s care. So for example GP’s, other consultants, other medication and, advice given to both patients and Health Care Professionals to be followed should problems occur. Endocrine Resource Packs can help with this and are available to purchase from The Pituitary Foundation. These include information leaflets of choice, posters, fact files aimed at GP’s, patient information sheets and magazines.
There is a newsletter that you can subscribe to which is sent out four times a year. This can be organised by emailing Miranda at; miranda@pituitary.org.uk
In Summary
As we have seen despite the resources and courses being made available people with Pituitary Conditions (and other LTHC’s) are facing serious consequences to their health due to a lack of knowledge in identifying and treating these conditions. The correct treatment given early provides a very positive outcome for the patient. That it why it is crucial to promote, support and work together to improve patient care in all settings by bringing together knowledge and resources across the wider community. Everyone involved has a role to play.
So please support the Think Pituitary Campaign! Go crazy on social media using the #ThinkPituitary and #PituitaryAwarenessMonth. You can also access Think Pituitary Facebook Photos and Twitter Headers via the Get Involved Awareness Page, complete the Online patient Survey, print the documents and help yourself and, others to increased confidence and, control over very difficult conditions to live with and manage!
All The Important Links!
Hormone Diseases - Definition Of Pituitary Insufficiency
The Pituitary Foundation - Definition of DI
The Addison’s Disease Self Help Group - COVID Guidance
The Pituitary Foundation
The Pituitary Foundation - Think Pituitary Awareness Page
The Pituitary Foundation - Think Pituitary Digital Leaflet
The Pituitary Foundation - Think Pituitary - Patient Safety Document - Adrenal Insufficiency
The Pituitary Foundation - Think Pituitary - Patient Safety Document - Diabetes Insipidus
The Pituitary Foundation - Think Pituitary - Patient Safety Document - Adrenal Insufficiency & DI
The Pituitary Foundation - Shop
The Pituitary Foundation - Getting Red Flagged - Factsheet
The Addison’s Disease Self Help Group - Newly Diagnosed - paramedic Information
Addisons Disease Self Help Group - Behind The Research - Ambulance Alert System
The Ambulance Alert Poster
The Pituitary Foundation - Referral Pads
The Pituitary Foundation - Endocrine Professionals - Publications
The Pituitary Foundation - Endocrine Clinic Resource Packs
The Pituitary Foundation - Think Pituitary - Get Involved - Social Media Resources