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Here to Help referral service

Being diagnosed with a muscle wasting condition can be a difficult and confusing time for your patients.

Getting the right support at the right time is crucial to live well, both physically and mentally. From the point of diagnosis to any period in a person’s journey.

As part of our ambition to reach more people living with muscle wasting conditions and ensure everyone can access the support they need, we’ve recently launched our Here to Help referral service, a pilot programme in the North West of England. If successful, we’re aiming to rollout the service across the UK.

We’re here to help

Our Here to Help referral service supports adults living with muscle wasting and weakening conditions, as well as parents and carers of children with a condition. It is designed to complement the clinical care and support healthcare professionals provide.

We provide trusted information, practical guidance, emotional support, and someone to talk to when it matters most.

Patients can be referred at any stage of their journey, although support is often most valuable at the point of diagnosis. Healthcare professionals can refer patients to us at a vital time, helping them access the information, support and connections they need.

Please note: This service is currently being piloted at selected hospitals. We’ll use learnings from the pilot to inform future development and expansion of the service.

What we offer

Information and resources to help people understand their or their child's condition better.
Advocacy and casework support for things like benefits, equipment and decision-making.
Someone to talk to from the point of referral.
Individual or group peer support to connect with someone who has similar experiences to share advice and support.

What you can expect

1.
Complete our simple online referral form

Our online referral form requires minimal information and uses pre-filled fields wherever possible to reduce input time.

2.
Within five working days of a referral, a member of our support team will call your patient.
3.
Following this first phone call, we will send a series of weekly emails for six weeks.

This will include helpful information about living with a condition, what services are available, other people’s stories, and how to connect with the wider neuromuscular community.

4.
A follow-up call will be offered, where we’ll talk through a range of topics to understand what’s most important for them.

This could include practical needs such as equipment or housing adaptations, as well as how they are feeling and any emotional support needs identified through a holistic needs assessment.

Interested in our Here to Help referral service?

If you’d like to find out more about the service, discuss future rollout areas, or explore how your organisation could become involved, please contact heretohelp@musculardystrophyuk.org.

Email us

Become a Clinical Champion

Our Here to Help referral service wouldn’t be possible without our Clinical Champions within hospitals. Acting as local advocates for the service, they help raise awareness, support referrals, and work with us to continually improve the referral pathway for patients.

Become a Clinical Champion

Other ways to support your patients

Even if you’re not part of the pilot, you can still access our trusted information, support services and publications to help your patients navigate life with a muscle wasting or weakening condition.

Support your patients
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