Counselling service - The Lily Foundation
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Fighting mito,
finding hope.

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Lily counselling service

We provide a free counselling service for patients affected by mitochondrial disease in conjunction with Rareminds

The Lily Foundation is pleased to be working in partnership with Rareminds to offer a free, confidential counselling service for patients and family members aged 18+ impacted by a mitochondrial disease diagnosis.

Six to twelve sessions can be provided either via Zoom or by telephone. Both evening and daytime appointments are available (weekdays only).

As living with mitochondrial disease happens within the context of your everyday life, it’s inevitable that the ‘ups and downs’ of both impact on each other. You can talk to our counsellors about anything you may be struggling with in living with the emotional impact of mitochondrial disease. This might include: 

  • the impact of your diagnosis on your family, social or work relationships
  • anxiety or low mood
  • identity (including feeling different, lonely or isolated)
  • dealing with difficult, unpredictable or increasing symptoms
  • the psychological burden of being the ‘mitochondrial disease expert’
  • coping with unpleasant tests or treatment
  • making difficult choices
  • worries about the future.

The Lily Foundation Counselling Team are Rebecca Hargreaves (Lead Counsellor) and Louise Brookes. Both are trained and experienced therapists who have undertaken additional training with Rareminds on Counselling for Rare Diseases.

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Rebecca Hargreaves MBACP (Accred.)

Rebecca is an Adult and Young People’s Counsellor with a particular interest in the psychological impact of health conditions on the family as a whole. She originally worked as a nurse for over 20 years, and was also the lead for a large school counselling service. Rebecca is also Rareminds’ ‘Living With’ Group Programme Lead.

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Louise Brookes MBACP

Louise has worked as an adult and young person’s counsellor in both the NHS and third sector. She has worked primarily with clients living with a range of long-term health conditions, including those with implications for neurodiversity and physical disabilities. She has a particular interest in issues around body image, self-esteem and eating problems.

It’s not always easy to access counselling. The Lily Foundation counsellors provide a safe, confidential relationship to work through difficult thoughts or feelings, and explore new ways of approaching your difficulties.

Since we launched this service at the start of 2024, we’ve been overwhelmed with interest. The team at Rareminds are currently working at capacity, but are open to new referrals although unfortunately we can’t give you any indication of how long it might be before you can speak to someone.

If you think you would benefit from this service, please email [email protected] in the first instance, marking your email ‘The Lily Foundation counselling’. We’ll add your name to our waiting list and be in touch as soon as possible to arrange an initial consultation.

Rareminds have also recently launched their Wellbeing Hub, a collection of resources aimed at helping those affected by a rare disease to navigate some of the more common emotional challenges they may encounter. Whether it’s practical advice or emotional support, dealing with a diagnosis or uncertainty about what the future may hold, Rareminds hope that everyone can find help and reassurance.