The Gauchers Association Counselling Service

The Gauchers Association new Telephone and Online Counselling Service is now up and running!

At the Gauchers Association, we believe that looking after your mental health is a key aspect of living as well as possible with Gaucher disease.

Living with a rare condition can be psychologically and emotionally challenging in a number of ways: 

  • On relationships in your family
  • Your relationship with health care professionals (especially if you have had a difficult journey to diagnosis) 
  • Dealing with difficult, unpredictable or increasing symptoms
  • Feeling different, lonely or isolated
  • Coping with unpleasant tests or treatments
  • Managing work or education
  • Worries about the future
  • Bereavement and loss
  • Your sense of yourself and your identity
  • On day-to-day life

Our Telephone and Online Counselling Service is a free, confidential service for all Gauchers Association patients and family members 

How can counselling help?

Counselling helps by offering a confidential, neutral space to talk to a trained professional. outside your usual support networks of family or friends. You might not always feel comfortable raising with family or friends certain thoughts or feelings with them if you are concerned it might worry or upset them, or because some things are hard to talk about, or to resolve. Or you might not have anyone around you that you can easily talk to.

Counselling means you can talk through confidentially what’s on your mind, or how you are feeling, with someone outside of your situation.

This process can often help you find a new way of thinking or feeling about something, or discover a new perspective or way of coping differently, or feel less alone with a difficulty.

What sort of things can I talk about?

As living with Gaucher disease occurs within the context of everyday life, it’s inevitable that the ‘ups and downs’ of both impact on each other. You can talk to us about anything that might be bothering you, including: 

  • Relationships – with a partner, family members, or your medical team  
  • Anxiety or low mood
  • Coping with tests and treatments
  • Dealing with diagnosis 
  • The impact of Gaucher disease on your life choices, and work
  • The psychological and emotional impact of symptoms
  • Body image or identity
  • Loss or bereavement 
  • Thoughts or fears about the future

Sometimes you might not know exactly why you feeling low or anxious, or experiencing difficulties such as not sleeping, or feeling on a short-fuse, or tearful, and it’s fine to contact us then too.

Is it Confidential?

As soon as you make contact  to request an appointment, your use of the service is confidential.

All counsellors and psychotherapists undergo clinical supervision with a senior practitioner, but names and identifying feature are disguised. We do not notify your hospital team or GP that you have made contact with us, and it won’t appear on your medical records unless you disclose that information yourself.

There are a few exceptions to confidentiality, primarily around concerns if you or someone else was at risk of serious harm. Even then, we would always endeavour to think with you if at all possible about the best person to approach for additional support (such as your GP) so we can all work together to keep you or someone else safe.

What happens in an Initial session?

This is an opportunity to let us know more about what you are finding difficult, or would like help with. We will talk through what you hope to get out of the sessions, and any questions or concerns you might have.

We’ll also decide together the timing, frequency and number, of any further sessions.

Usually, we suggest a series of between 6 and 12 sessions (either weekly or fortnightly) but that is only a guide.

Appointments are usually for 50 minutes.

There’s another member of my family who’d also like to speak with you too. Is that ok?

One of the reasons we have two counsellors on the team is so that different members of the same family can still access the Service. You can then each see a different counsellor to maintain your privacy.

You can contact us if you are a patient yourself, a partner, a parent, or other family member.  If for any reason you’d particularly like to speak to either a male or female counsellor, then just let us know that when you make contact.

The service is currently only available to those  aged 18 years and over. 

How long will I have to wait for an Initial appointment?

We aim to respond to all enquiries within 72 hours. We can usually offer you an Initial Appointment within a couple of weeks, depending on service demand and mutual availability. 

We do not offer appointments at weekends, but we are able to offer evening appointments. 

What if I’m not sure counselling is right for me?

You are very welcome to arrange a brief initial conversation with one of our counsellors before making a decision about going ahead with counselling.  Just let us know when you make contact.

If we think somewhere else might be more helpful for you (eg medical advice, money worries, or practical support etc) we will also try to help you find the right support for your difficulty. 

I’m not very confident with technology, can I still use the service?

Our counsellors are all very experienced in working via telephone or online (usually using Zoom). Do let them know if you have any concerns. They can talk through with you using your mobile/landline or downloading anything you might need for video-sessions if that is what you would prefer.

In some instances, we can also use assisted technology such as speech to text software if you are hard of hearing. 

How do I make an appointment?

Get in touch (in confidence) with Sarah Allard in the office on sarah@gaucher.org.uk or telephone 01453 549231.  Sarah will provide email addresses and contact information for you to make direct contact with the service when you are ready.

The Gauchers Association  Counselling Service has both female and male counsellors. It is available to all those impacted by Gaucher disease regardless of ethnic, cultural or religious background, sexual orientation or disability status.

All our counsellors are registered with either the British Association for Counselling and Psychotherapy www.bacp.org or the United Kingdom Council Psychotherapy.org www.ukcp.org and are bound by their Professional Good Practice and Ethics Guidelines.

The Gauchers Counselling Service is provided in partnership with the non-profit organisation ‘RareMinds: Mental Health for the Rare Disease Community’ www.rareminds.org

Useful numbers: 

Please be aware that the Gauchers Association Counselling Service is not a crisis service. If you are concerned that you may not be able to keep yourself (or another person) safe, please contact your GP, or dial NHS

111 for advice. If you or another are imminently at risk of harm, call 999 or go to your hospital A and E.

The following organisations also offer additional helpline support during a mental health crisis, or if you are feeling emotionally overwhelmed.  

  • The Samaritans www.samaritans.org provide excellent 24 hr listening, support and suicide prevention service on 116 123 (free) or jo@samaritans.org 
  • CALM is the Campaign Against Living Miserably, for men aged 15 to 35. Phone: 0800 58 58 58 (open from 5pm to midnight everyday of the year) www.thecalmzone.net
  • PAPYRUS is for young people under 35 in crisis or feeling suicidal. Phone 0800 068 4141 (open 9am - midnight every day of the year) or pat@papyrus-uk.org. www.papyrus-uk.org
  • SHOUT is a free, 24 hour confidential text based service for anyone in crisis. Just text SHOUT to 85258. 

Cancellations/Missed sessions Policy

rareminds will invoice for any sessions cancelled by a counselling service client with less than 72 hours notice. Where possible, counsellors will offer an alternative session subject to mutual availability.