Living with any on-going health condition is challenging, whether you’re newly diagnosed, ‘had it for ages’, or if someone you’re close to has been diagnosed.
Any on-going condition has its ups and downs: sometimes it’s more in the background and sometimes it’s more ‘in your face’. Often, talking to family members or friends can help you feel supported, but sometimes it may be helpful to speak with someone who has ‘been there and done that’.
Peer Support
We offer two different ways to speak with others affected by ACC:
- Private Facebook Group – all registered members of AMEND affected by ACC are invited to join our private Facebook Group specifically for ACC. You can join here now for FREE.
- Peer Support Meetings – our volunteers run regular virtual meetings for those affected by ACC, both patients and partners/carers. You can find out more about these here.
Since I have joined this group, I have never felt alone. I have made friends who I have yet to meet in person who have been with me during the highs and lows, day and night. A wonderfully supportive, non judgemental community of beautiful people. This group is invaluable in every way providing emotional and practical support and own experiences.
Our free Counselling Service
Sometimes, the thoughts, feelings or situations you are experiencing might feel complicated, confusing and difficult to talk about. That’s when it can feel helpful to talk to someone who has been trained to help you express and explore your thoughts and feelings from a more neutral position. It can also be hugely helpful to have practices and tips you can use on a daily basis to help calm your mind and thoughts. AMEND’s free and confidential Online and Telephone counselling service is available for all our registered patients and family members.
Our counsellors are trained and experienced practitioners registered with either the British Association for Counselling and Psychotherapy www.bacp.org.uk, or the United Kingdom Council for Psychotherapy www.ukcp.org.uk. They also have additional training and experience in understanding and managing the impact of MEN, and associated conditions.
Our Counsellors are Kym Winter (Lead Counsellor), David Phipps and Rebecca Hargreaves. They are often to be found providing valuable input at our Annual Patient Information Days. Find out more about our Counsellors
Our Counselling Service is provided in partnership with rareminds CIC
Information on Mindfulness
Sometimes it’s helpful to have strategies you can use to help you on a day-to-day basis when coping with conditions like ACC. To help you develop these strategies, AMEND have produced publicly available podcasts and introductory video about Mindfulness. Patients, carers and family members affected by ACC can access these via the AMEND YouTube Channel
Counselling Service FAQs
We believe that anything that is interfering with your ability to live as well as possible with your condition can benefit from talking through. Sometimes talking with someone outside the circle of family or friends (who you might otherwise talk to) can help you find another perspective, a new way forward, or share things it might otherwise not be easy to talk about. Some of the issues that people seek help with are:
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- Coming to terms with a diagnosis – feeling frightened, angry or isolated
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- Feeling anxious or depressed
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- Dealing with your medical team
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- Relationships with your partner, or other family members
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- Coping with difficult symptoms or treatment
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- Impact on your family
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- Fears about the future
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- Talking to children about the condition
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- Thinking about having children
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- Managing work
A session is usually 50 minutes long but this may be shorter if you are feeling unwell, or recovering from treatment such as surgery. The number and timing of sessions will be agreed between you and your counsellor at the initial appointment. Sometimes a number of sessions weekly or fortnightly can be helpful, or around key dates such as hospital appointments or treatments.
We aim to respond to your initial enquiry with within 72 hours. We are usually able to then offer an Initial Appointment within 5 -10 days, depending on your availability and the next available appointment time.
No. Sessions can always be held over the telephone. If you would prefer to have Video Counselling though, we can also talk you through how to set that up. Our counsellors are all experienced in telephone and online counselling, so do raise any concerns with us.o
Sometimes it’s helpful to have strategies you can use to help you on a day-to-day basis when coping with conditions like ACC. To help you develop these strategies, AMEND have produced publicly available podcasts and introductory video about Mindfulness. Patients, carers and family members affected by ACC can access these via the AMEND YouTube ChannelTwo of our team are based in Hertfordshire and are able to offer face-to-face appointments there. If you would prefer to see a counsellor face-to-face , we can also advise you on accessing counselling locally to where you live.f
We offer a limited number of evening sessions, so do just let us know this when you make contact. Unfortunately, we do not offer weekend sessions.
No. ACC Support UK’s Counselling Service is free to registered members.
Yes. The only circumstances in which we would talk about you to someone else (e.g. your GP/hospital) is if we were concerned that you were about to harm yourself or another person. Even then, we would make every effort to discuss this with you first to gain your agreement about who to talk to.
As part of professional good practice counsellors also have clinical supervision to discuss their work but identifying features of patients are removed.f
We can support you in building a good working relationship with your hospital team or GP. We would only talk to them on your behalf if we were very concerned that you were at risk in some way.
Talking about private and personal matters is often not easy, especially with someone new. If you feel unsure about counselling, or have had a disappointing counselling experience before, let us know. That way we can try and work together to make sure it is a more positive experience.
AMEND’s counsellors also have particular understanding and awareness of the conditions that AMEND works with, and the challenges of living with a rare disease. This can help in understanding its impact on you as an individual.
We take a very straightforward approach that if something’s bothering you, it’s worth talking about.
It can be helpful to have your own separate space to share more difficult thoughts and feelings without worrying how they could impact on your partner. This is one of the reasons that we have more than one counsellor on our team. In some instances, we can also offer couples sessions.
It’s important that someone decides to take up counselling for themselves. For that reason, we only book appointments if someone contacts us directly.
If you are concerned about someone, however, please contact us and we can talk through with you how best to support the person you are worried about.
It helps to be able to speak in a comfortable, quiet place where you feel you can speak freely without being overheard or distracted. If we arrange further sessions it is usually helpful if they can be at the same time each week, so giving some thought in advance to when you are going to be available is useful.
Contact details for the Counselling Service are provided upon registration within the welcome pack that you are sent. If you have lost the contact details, please contact the office.
More Resources
Rareminds Wellbeing Hub
Rareminds Wellbeing Hub contains a huge amount of information on emotional wellbeing, covering such topics as dealing with diagnosis, living with uncertainty, and talking about dying, among others.