Living with a long-term health condition can mean you have to be your advocate and attend many appointments. Over time you can become an expert at juggling appointments, learning about your conditions and navigating the care system within which we are part of.
At times this can feel like a full-time job — especially if you are managing multiple conditions and have treatment across hospitals in different areas. It can feel like your medical team is disjointed and that they fail to communicate with each other — meaning you take on the role of advisor, educator, informant and patient all at the same time which can be exhausting and frustrating.
However, putting time in to establish good working relationships and taking the time to become knowledgeable about your conditions will make it easier to navigate what can feel like a complex and challenging situation.
Top tips from patients
Sometimes it’s the patients themselves who can give the best advice on how to get the most out of consultations and on how to manage the demands of chronic conditions that involve attendance at multiple medical appointments.
Some recent research by the Pituitary Foundation asked patients to share what patients have learnt on their journeys. A few of the responses are below (contributions were shared anonymously):
Contact
'Get a direct number for your consultant's secretary, often in your letters. They're the people to chase to get things done. Being proactive is key’
Tests and results
‘In the past when I’ve been told I need certain tests I thought of that as being the next stage, but afterwards realise that I have no idea how long the results will take or who to contact if I don’t hear within a certain timeframe (and test results have gone missing or unread) - so I feel a bit lost. So now I make sure I always know what the next stage is whether this be a date for the next appointment or a time frame, and it helps me feel more in control’
Be your own advocate
1. A rare condition is rare, so be prepared to be the expert in your appointment, especially if you're up to speed with the Pituitary Foundation (UK) literature and they're not!
2. Take your partner or another advocate with you — if nothing else they can take notes but they'll probably have plenty to contribute. They may know you better than you know yourself.
3. In the event of an emergency, you need your partner/advocate to keep telling the professionals what is wrong with you! On a couple of occasions, I've been taken through the whole stroke/heart attack routine before an adrenal crisis was even considered - despite having a medical alert wristband and my wife fighting my corner!’
Supporting a child through the healthcare system
As a parent or guardian looking after a child with a pituitary condition can be challenging. You want the best for them and their future is in the hands of the team within which they are looked after. But you have a key role to play as these parents advise:
Research
‘I spent a lot of time reading research and changed my son's consultants to those researching into the condition. They were much more ready to accept different approaches since they were fully aware that we do not know it all!’
Know Your Child and Advocate
‘My best advice is you know your child. Therefore if something is wrong advocate and keep advocating. Finally don’t imagine that the system is kind or works for you. Sadly you have to constantly ring up, get to know consultants' secretaries, be pushy, ask for things (they can only say no) and finally prepare for this admin to be a part-time job’.
Something For Everyone
Get a file, summarise all numbers at the front (hospital numbers etc) and be prepared to send cross referrals yourself — they assure you they have gone but they may not have.
Keep a record of all your appointments for each condition and medical professional you see
Keep a copy of all your test results
Don’t assume that your GP will have everything from each person in your team. If you need to see them take your file with you for reference
Always write down questions you have each time you attend an appointment, jot down the answers and store them in your file
Always update each medical professional with anything that is happening in other specialties if it's relevant to you — some situations will impact your pituitary condition
Be open and honest with medical professionals about how you are feeling. Your mental well-being is just as important as your physical and can impact on your pituitary condition
Navigating the healthcare system may feel daunting, exhausting and time-consuming but creating a good working relationship and understanding with the whole medical team will give you a much better outcome for treatment and management of your health in the long term. It takes effort, determination and resilience but there is a lot of support available to you.
Support available
The Pituitary Foundation: https://www.pituitary.org.uk/
Addison’s Disease Self-Help Group: https://www.addisonsdisease.org.uk/
Patients Association - Long-term health conditions: https://www.patients-association.org.uk/long-term-conditions