MPS Society Young Peoples      Counselling Service (16+) 

Information for Parents and Carers 

About the Service 

The MPS Society Counselling Service was set up in 2021 in partnership with raremindsCIC, www.raremindsCIC who specialise in counselling for those impacted by rare, genetic and undiagnosed conditions. Two counsellors (Stephen Johnson and Zubyda Azzam) began working with our adult community in 2021. In 2022, the service expanded to offer counselling to ages 16+ with the appointment of a new Young Persons Counsellor, Rebecca Hargreaves. 

If your son or daughter is thinking about counselling, some young people may want your help to make contact. Others, depending on age and reasons for coming, may not want to involve you, or want it to be private. 

Here are some questions you might have about the counselling service.

How can my son/daughter access counselling? 


Young people can refer themselves directly, and so your son or daughter may seek help without you knowing about it. We ask young people to make contact themselves to the service because it is crucial to the success of counselling that they have opted for the process themselves without feeling ‘sent’ by someone else. 

They can ask for Rebecca’s contact information in the first instance either by emailing or calling 0345 389 9901.

It is a free, confidential, and private service providing one-to-one talking therapy. Young people themselves can share with others what happens in their sessions, but the counsellor and the service cannot. We appreciate that this might feel difficult for caring parents, but confidentiality is important for counselling to be effective. 

There are a few limitations to this confidentiality (such as if we felt your young person’s safety or another’s is at risk) and we explain this to your young person when they make contact. 

Is there a cost? 

There is no charge for sessions, but you can make a donation to the MPS Society by visiting our Donate page on the website.

What sort of things can counselling help with?

Some young people need help with living as well as possible with MPS, Fabry or related conditions. This might include the emotional impact of life experiences such as bereavement and loss, the separation and divorce of parents, or relationship struggles at school. Sometimes it might be about fears or hopes for the future. Timely intervention can prevent the deterioration of distress into mental ill health, and early intervention often makes a difference.

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How long are the sessions for? 

Individuals and families living with MPS, Fabry and related lysosomal diseases receive the support they need to help them to experience the best possible quality of life.

What about Confidentiality?

There is a strict confidentiality code of practice which is the same in all types of counselling and psychotherapy. Every young person accessing the MPS Society service signs an agreement with their counsellor explaining that the service is confidential. 

There are a few exceptions to this for example, if a counsellor feels that the individual is at risk of significant harm, or likely to harm others. In those instances, they will always take appropriate steps to reduce the risk of harm such as contacting a young persons nominated ‘person of trust’ (often a parent or carer) or other health or social care professionals.  

Why can’t parents talk to the counsellor too?

Young people need to feel ‘safe’ to talk and to build trust in the counselling process. This means feeling safe enough to talk openly about the things they are struggling with, in their own time. It is also the reason we will not routinely let their medical professionals know if they have made contact with us. Confidentiality is key to this. 

What if I am worried?

If your son or daughter tells you something that alarms you, it can be helpful to talk with another professional. This might be another counsellor in the Service (Stephen or Zubyda) your GP, or their CNS or specialist doctor. 

If you are very worried about them or their safety, you can also contact NHS 111 for further advice or go with your child straight to A and E. 

I think I might need some support too. Is this possible?

Of course. This might be for your own difficulties, as a parent, or a combination of both. Just email  or call 0345 389 9901 and ask for the contact details for the MPS Society counselling team. A counsellor will make contact with you within about a week following your initial direct request for counselling. 

Our Information Sheet for Young People is available here (which links back to the website text) 

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The MPS Society Counselling Service has both female and male counsellors. It is available to all those impacted by MPS, Fabry diseases and related conditions 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 or the United Kingdom Council and are bound by their Professional Good Practice and Ethics Guidelines.

The MPS Society Counselling Service is provided in partnership with the non-profit organisation ‘Rareminds: Mental Health for the Rare Disease Community’ 


Useful Links 

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YoungMinds Parents Helpline 0808 802 5544 also provides further advice (9:30am - 4pm, Monday – Friday) for parents of young people up to age 25. 

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Rare Youth Revolution is a global news and opinion, digital magazine platform, dedicated to powering up the voices of the youth rare disease community. They also have a Facebook Community.

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