AMEND’s Counselling Service is available to:

• Registered members of AMEND aged 16 and over
• Children aged 14 or 15 years with the consent of a parent who is a registered member of AMEND
• Residents of the United Kingdom (for insurance purposes)

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Here at AMEND 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:

• Coming to terms with a diagnosis – feeling frightened, angry or isolated
• Feeling anxious or depressed
• Dealing with your medical team
• Relationships with your partner, or other family members
• Coping with difficult symptoms or treatment
• Impact on your family
• Fears about the future
• Talking to children about the condition
• Thinking about having children
• 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.

Two 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.

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. AMEND’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.

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.

The AMEND website has a section under Patient Resources which address issues such as Understanding your Condition, Living with Uncertainty and Dealing with Diagnosis. There are also a number of videos with titles such as ‘Looking after Emotional Wellbeing’, ‘Mindfulness’ ( a particular technique to help deal with stress, anxiety etc.) and patient stories. There is also an active Facebook community for each MEN or related condition.

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.