We provide professional, fully managed and insured Telephone and Video Counselling Services for your rare disease patients and family members.

All of our counsellors have completed our innovative Counselling for Rare training, and are experienced and qualified online therapists.

Our Counselling Services

Specialist Rare Disease Counsellors

Patients and family members often tell us how helpful it is to speak to a counsellor who already understand the complexity and impact of living with a rare disease.

Allocated Lead Counsellor

We allocate every organisation a Lead Counsellor to work closely with your organisation.  Their role is to develop expertise in the experience of your particular patient group and rare disease.  They can develop resources with you, attend your Patient Information Days and Clinics, support your patient leaders or run trainings and workshops.

Fully Managed Service

We work closely with you to help establish counselling as a resource for your patients and family members. We take care of all the administrative, clinical and managerial aspects of running your Counselling Service. All our counsellors have regular supervision with a senior therapist.

Telephone & Video sessions

We appreciate that rare disease patients already deal with the increased burden of accessing specialist health services some distance from their home.  All our counsellors have completed a BACP approved training in offering counselling online.

Private Therapy Service

We appreciate that there is still some way to go before all charities and services can provide access to specialist rare disease counselling.  In the meantime if you are a member of the rare disease community (ie a patient, family member or healthcare/charity professional) you can access our Private Therapy Services here 

Couples Counselling

Living with a rare disease emotionally impacts not just individuals, but couples and families too.  We can also provide our trained Couples Counsellors as an additional resource for your organisation. LEARN MORE

Outreach at Clinics or external services

By occasional attendance at key hospital- based clinics , we build awareness of your Counselling and Wellbeing Service amongst both key professionals and patients.

What we offer

  • 9Counselling service set-up, delivery & management
  • 9Specialist rare disease counsellors
  • 9A Lead Counsellor to get to know your rare disease, and community
  • 9Support for your patient leaders or professional support leads
Training & Support

Patient Leaders need support too

Find out more about our support services for Patient Leaders, peer supporters on an individual or group basis

Counselling for Rare Disease: our approach

We work from the evidence-based approach of psychodynamic interpersonal therapy, and incorporate aspects of mindfulness – based CBT.  Our innovative ‘Counselling for Rare Diseases’ training is mandatory for all clinicians who work with us.  We do not believe in a one-size-fits-all approach.

We work with clients as individuals unique personalities, backgrounds and set of circumstances. 

We can support clients to alleviate emotional distress by learning simple techniques to help manage and bear anxiety, low mood, pain, fatigue etc. We also explore with clients the history and meaning of their unique experiences and responses in the context of both their past and present.

From a clinical perspective, we are patient focused not symptom-led. We aim to have a lasting impact for our client’s emotional wellbeing, and to have a positive impact on their capacity to adapt to, and live as well as possible, with their condition.

Counselling can help issues such as:

  • 9Relationships with a partner, or in the family
  • 9Anxiety and low mood
  • 9Sense of self, identity and body image
  • 9Fears for the future
  • 9Bearing uncertainty
  • 9Life choices (including work issues)
  • 9The emotional impact of physical symptoms
  • 9Managing difficult tests or treatments
  • 9Loss, grief and change

Our Clinical Team

All clinical staff are accredited / working towards accreditation, with one of the main professional bodies such as UKCP or BACP and are bound by their Codes of Ethics & Practice.  All are DBS checked, hold professional indemnity and Public Liability Insurance, and are experienced in providing counselling by telephone or video-link

Our team includes both male and female counsellors, trained to work sensitively and appropriately regardless of gender, sexual orientation, cultural or religious beliefs, disability issues and ethnicity. Our Young People’s counsellors also have additional training in safeguarding issues.

Our Network

We can draw upon a wide network of Associate Therapists (known and approved by us) and other associated professionals to meet service demand, or project need.  We occasionally offer Honorary placements to newly qualified therapists or Advanced Level trainees.

If you want to apply for an honorary placement or to be a part of our team please get in touch.

'The Counselling Service has been an essential part of our support services for many years.  Having the ability to refer our members to the service at any time has been critically important both for the person referred, and for staff and volunteers who might otherwise feel helpless in the face of emotional distress."

Supporting you to support your rare disease community

01727 752147

High Street, St Albans, Hertfordshire, UK