Frequently Asked Questions

We are more than happy to have an informal chat about how how we can help, and what services you would like to know more about.  We have provided some more information here but please don’t hesitate to get in touch if you have any more specific questions. 

We are not a one-size-fits-all service and are always happy to have further discussion!

General Questions

We are a very small charity. Can we afford you?

Let’s talk! Our aim is to be available to be any charity or patient group that feels counselling or wellbeing services might be helpful.

We can also help you to partner with another charity/group with a similar rare disease in order to provide a ‘joint service’ thus maximising affordability.

Why should we not just use a general counsellor or psychologist?

General counselling or psychology services can be helpful.  However, there is evidence that the complexity of rare disease experience may require specialist understanding and counsellor training*

Many IAPT/counselling/psychology services can only offer a set number of sessions, or work within a particular treatment model. This is not always most appropriate for the rare disease patient whose experiences and needs are unique and complex (for more information on our approach click here)

Our services encourage patients/family members to access ‘your’ specialist counselling service at different points in their life, according to the impact of life events or disease trajectory. We always aim to place a client with the same counsellor they saw previously. This also maximises the efficiency of the counselling within a set number of sessions, given the pre-existing trusted relationship and counsellor-client knowledge.

* Living with a Rare Condition: the impact on mental health (2018) Rare Disease UK Report.

How is what you offer different from genetic counselling?

Genetic counselling is often offered at diagnosis, or when considering children. It focuses primarily on the implications of carrying a genetic condition medically and for life choices around having children. It involves education and information about the disease, referral to specialists, and can involve some psychological counselling. It is unlikely to be available for more than a few sessions.

The personal psychotherapeutic counselling that we offer involves exploring the meaning and impact of the disease at a more personal level. It typically involves a series of sessions over an agreed time.     

We are a specialist clinic in a hospital setting, would you be able to work with us?

We would be pleased to discuss with you becoming a commissioned service for your particular patient group, or to work in a supportive referral capacity alongside your existing psychology services or nurse specialists.

Our clinical work is primarily by phone or online, but we can also attend occasional clinics for outreach or training and information events.

How many sessions of counselling do you offer?

This is decided between the individual counsellor and the client. It will be informed by a combination of service demand and availability, and client need. It may involve weekly/fortnightly/monthly sessions over a fixed period, with review points agreed between both parties.   

Can you talk with us about a patient?

Assuming that a patient is already seeing one of our counsellors, our ethical commitment to confidentiality means we cannot speak to you without a patients consent . The only exceptions to this are if we had substantial concerns that a patient was about to put themselves or another at serious risk.

Should a client not be already seeing us, we are always pleased to think with clinicians, support workers or patient leaders about how best to support patients or family members that are causing concern.

We are based outside the UK. Can we still work with you?

For Counselling Service provision we will work with you to establish services appropriate for, and embedded in, your particular country and culture. 

Some of our counsellors already work internationally. For collaborative working on projects , or as speakers for events we are always pleased to be involved with the wider rare disease community.

We are not sure what sort of services would we best for us, or what we need. Can you help us think about that?

We’d love to! We can help advise on this based on our experience. Factors taken into account will include the size of your patient membership, other support services already in place, the severity of impact of the disease at what point in the lifecycle, and disease penetration in the population.

Please feel you can to discuss further , whatever stage you are at.

About Our Services

Counselling Services

We allocate every partner organisation a Lead Counsellor who works closely with you to develop expertise in your particular rare disease and to become known and trusted by your particular patient group. They can develop resources with you, attend your Patient Information Days and Clinics, or run trainings and workshops.

All our counsellors are experienced and trained in both the psychological aspects of rare disease as well as providing telephone and video counselling. 

Emotional Wellbeing Resources

We provide resources that address and support emotional wellbeing across your patient community.  This may include downloadable leaflets on issues such as Dealing with Diagnosis, or Managing your Medical Team.  We also support parents with information and advice on parenting children and teenagers with a rare disease.

Education & Training

We are passionate about raising awareness amongst both patient and professionals about the mental health impact of rare disease.  We provide training and speakers for patient groups, healthcare professionals and pharmaceutical companies on the psychological aspects of rare disease.  We are always pleased to support individuals looking to develop their emotional wellbeing resources and research.

Supporting the Supporters

We appreciaite that being a Support Lead can be at time stressful and demanding. Wed love to help, whether that’s 1:1, as part of a group or with training on issues like Managing Group Dynamics, or Dealing with Difficult Situations.

Consultancy

We are always keen to explore with you and to develop particular and specific projects or ideas.  We contribute personnel, data, training or consultancy on projects such as developing resources for young people, organisational processes, data analysis and resources development.

We work with organisations to provide data and content for Journals & Reports as well as providing supporting content for fundraising applications and grants.

Have a Different Question?

Email us anytime

Or call — 01727 752147