Living with a Pituitary condition can be debilitating and distressing. It can impact not just on the patient but family and friends. Recognising the contribution carers make to those with Pituitary Conditions and offering support as needed is vital to successful management.
Pituitary conditions are rare and as a result knowledge about the conditions can be limited and therefore lead to employers and social networks lacking understanding as to what the affected person goes through on a daily basis. The fluctuating nature of symptoms can be an additional factor making it hard to manage.
Carers play a vital role in enabling those with a pituitary condition to lead as normal a life as is possible within the limitations of their illness. This can be further impacted by additional medical conditions and disabilities. Carers are crucial in allowing the person affected to live a happy and healthy life whilst ensuring relationships with family and friends are maintained.
Help for the carers
Supporting someone with a long-term health condition can be challenging. Being anxious, frustrated and sometimes angry is quite normal and common. There are many networks of support including the Pituitary Foundation and Carers UK.
This support is being actively promoted during this Carers Week which runs from 10-16 June. The theme for Carers Week 2024 is 'Putting carers on the map'. Helen Walker, chief executive at Carers UK said:
"We want carers to know they are not forgotten, and they are not alone. The dedicated, committed support unpaid carers provide day in day out has been valued as the equivalent of a second NHS, but often carers tell us that they feel unseen and undervalued. Many are at breaking point, facing challenges managing caring alongside their own health and wellbeing – with 78% of carers worried about being unable to care in the future.“Recognition for carers in their communities and at national government level during an election year has never been more important – making Carers Week a vital opportunity to put carers on the map.”
Carers need to be recognised for the difficulties they are experiencing, respected for all they are doing, provided with information, and given the support they need to care safely.
Support available
Carers UK offer a free membership for carers. Benefits of this include:
regular updates by email on the latest carer news and information
access to Carers Connect, an online community for carers
quarterly members' magazine, Caring, sent by email or post
opportunities to get involved in research and campaigns
exclusive member discounts and giveaways.
The Pituitary Foundation offers services for carers who are struggling or just need some guidance and advice. This comes in the form of a helpline, local support groups and peer support through a dedicated telephone buddy service. You can access all the information here.
Urgent Support and Guidance on all Care Needs
For information and signposting, Carers UK have a telephone helpline which is available on 0808 808 7777 from Monday to Friday, 9 am – 6 pm (including Bank Holidays). If you have a more complex query or would like more detailed guidance, you can contact the email helpline (advice@carersuk.org), as they will be able to provide more information.
If you need somebody to talk to or a listening ear, the Samaritans is also available 24 hours a day, 365 days a year on 116 123 or you can email jo@samaritans.org
Articles that support Carers and their Families
The following articles offer some great insight into the world of caring for someone with a pituitary condition. Research into the impact of Pituitary Disease on the caregiver and also some specific guidance on caring for adults and children with a pituitary condition.
The Impact Of Pituitary Disease On The Family Caregiver: https://pituitary.org/medical-resources/pituitary-family-resource-center/the-impact-of-pituitary-disease-on-the-family-caregiver-and-overall-family-functioning/
Caring For An Adult With A Pituitary Condition: https://www.pituitary.org.uk/information/caring-for-an-adult-with-a-pituitary-condition/
Caring For A Child With A Pituitary Condition: https://www.pituitary.org.uk/information/caring-for-a-child-with-a-pituitary-condition/