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Nursing with a long term condition

If you're a healthcare professional with a long-term condition, this page contains helpful resources, case studies and information on how to get peer to peer support from other RCN members.

There is also advice around reasonable adjustments for long-term conditions and a new LTC Health Ability Passport template, designed to capture specific needs around long-term conditions at work.

Support for members with long-term conditions

A long-term condition (LTC) can be defined as a ‘health problem that requires ongoing management over a period of years or decades and is one that cannot currently be cured but can be controlled with the use of medication and/or other therapies’ (NHS Data Model and Dictionary, 2024). This means that for nursing staff working with a long-term condition, suitable practical support and/or reasonable adjustments may be needed to maintain a healthy work environment. 

The RCN's peer support network includes members living with long-term conditions and is a great way to combat isolation whether you have a new diagnosis, are navigating working life, or considering ill health or age related retirement. 

If you have questions about your rights and responsibilities at work or feel you are being treated unfairly as a result of your long-term condition, please contact RCN Direct.

On this page we share stories from members with lived experience long-term conditions and resources to help you.

In September 2024, Natasha and Tincy from this page also featured in an RCN article alongside Amanda who has type 1 diabetes: 'My diagnosis doesn't define me': working with a long-term condition'.

Ashley's story

Ashley's story - see the whole person

Ashley is a registered nurse working in a nursing home. She has Fibromyalgia, Long Covid and is neurodivergent. 

Ashley explains that her conditions are all invisible yet interact with and exacerbate one another.  She advocates for employers applying a person-centred approach to staff with long term conditions, as nurses do with patients. 

Staff and employers must work to be more understanding and to consider that invisible conditions may be a factor affecting colleagues at work. 

Our Long Covid hub contains information for healthcare professionals with Long Covid, union reps and managers. 

Nicola's story - understanding is needed to retain experienced staff

Nicola is a community midwife with over 20 years experience. She has Hyperthyroidism and Fibromyalgia.

In her story, Nicola reflects on how her own experience of long term conditions has enhanced her empathy and understanding of patience.

Nicola asserts that a greater understanding of invisible disabilities is needed to ensure that we retain experienced staff. Employers must demonstrate their commitment to supporting staff with long term conditions with actions, not just words. 

Nicola recommends self-educating when diagnosed with a condition. Fibromyalgia Action UK have been a source of reliable information and support for her. 

Nicola's story

Emma's story - Inclusive healthcare workplaces are good for everyone

Emma has been nursing for 25 years. She shares how she left nursing to become a teaching assistant whilst recovering from severe ulcerative colitis and how she later returned to nursing.

During the pandemic, emergency surgery led to permanent stoma and a diagnosis of Crohn's disease.

For Emma, subtle actions by her employer have helped her feel safe to disclose her health issues and get the support she needs.

Her own experiences have also enhanced her patient care. 

Tincy's story - life after Parkinson's diagnosis

Tincy talks us through from her diagnosis to where she is now. Her story is full of positivity as she discusses:

  • The stigma facing those from ethnic minority backgrounds that spurred her on to become an advocate for those with Parkinson's
  • How her lived experience of having a long-term condition has enhanced her patient care
  • Why a diagnosis of a long-term condition needn't hamper your career progression.

Parkinson's UK is doing work on race equality in research.

Clare's story - nursing with a diagnosis of Parkinson's

Clare shares her journey so far from getting a diagnosis, to retiring and returning. 

She stresses the benefits of open and honest discussions with line manager and team mates.

Clare co-founded the NHS professionals living with Parkinson's group. If you would like to know more you can contact Clare by email at C.Addison@NHS.net

The group has gone on to advocate for Parkinson's patients and raise awareness on time critical medications - winning a HSJ award for their efforts. 

Natasha's story - a nursing student with ME and endometriosis

Natasha is starting her final year of the nursing degree. Pre-existing diagnoses of ME, Endometriosis and Dyslexia have not stopped her excelling.

Natasha shares:

  • Why it's important to take ownership of your reasonable adjustment needs on placement 
  • The benefits of a diverse nursing workforce
  • How placement providers can support students and staff with long-term conditions and/or disabilities
  • Her hopes for the new RCN placement adjustments passport.

Natasha's story

Reasonable adjustments for long-term conditions

Our Health Ability Passport guidance has been developed with members with lived experience of disability, neurodivergence and long-term conditions. 

With Callum Metcalfe-O'Shea, RCN professional lead for long-term conditions, we have reviewed the guidance to make sure it supports members with a long-term condition diagnosis.

Use the guidance along with our long-term condition specific passport template to ensure you have helpful conversations with your line manager that:

  • Consider your specialist team reviews to ensure adjustments remain effective and appropriate
  • Look at the impacts of medications and treatments and make adjustments around this
  • Acknowledge fluctuating symptoms and plan for flare ups. 
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Long-term conditions passport

Download our LTC passport template designed to capture specific needs around long-term conditions.
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Contact the advice team

We are here to help.

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Join Peer Support

Connect with other RCN members with long-term conditions.

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Your story here?

Find out how to share your lived experience of disability, neurodivergence or long term conditions.