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Transition was good. Everyone was friendly, helpful and caring

TRANSITION

Support

Within the South West Neuromuscular Operational Delivery Network, there is a team of people to support you with managing your neuromuscular condition.

The team that you work with might include your consultant, physiotherapist, psychologist and advisor alongside many others. If you need to contact any of them then you can find details below. Your advisor is also a good person to talk to if you are unsure who to contact.

Your team

Living with a Neuromuscular Condition can be difficult both emotionally and physically. Your team are there to help you withall aspects of your condition and you can talk to any of them about the impact that it is having on you and your life. each team member may have skills that can help with specific aspects. 

We recognise that having a neuromuscular condition can have an impact on you emotions. If you would like support with managing your feelings, which can include heightened anxiety, panic attacks, low mood, depression, low self-esteem, poor body image please talk to your Neuromuscular Care Advisor, you may also be able to access the support of psychologist.

Neuromuscular Care Advisors

You should already know who your neuromuscular advisor is; this person stays the same when you transition to adult services (unless you move house to a different area).  You can contact them if you have any queries or questions in between clinic appointments; they can provide advice over the telephone, undertake home visits and share information on your condition with other services as required. They can provide advice to you, and your family if needed, about a wide range of non-clinical issues such as:

  • Providing you with information to help you manage your condition and make the best use of the services available to you
  • Liaising with educational institutions and work places to ensure they have a clear understanding of your needs
  • Providing information on services available to provide advice about access to work, eligibility for benefits, access to specialist equipment such as home adaptations and specialist wheelchairs.

They are a good contact if you have any questions or worries about transition, they will also talk to you and help you with taking more responsibility for your condition and complete Ready Steady Go Transition Paperwork with you.

You can get in contact with the neuromuscular advisor for your area on the main contact number 0117 4141184, or their direct number can be found on Clinic Letters or via the SouthWest Neuromuscular Operational Delivery Network Website (SWNODN). This website has lots of information about the neuromuscular service across the South West. 

Information and support 

There are many organisations and charities that can provide advice and support. Some of these are relevant for all conditions and others for specific neuromuscular conditions. 

Emergency Alerts

It can be useful for you to carry an 'alert card' with you so that if something happens to you whilst you are out and about, you can easily inform someone of vital and specific issues that affect you.  You may know about these already, but if you would like more information on them, please visit Muscular Dystrophy UK's website; they have created a number of different alert cards for different neuromuscular conditions. You can find the information about these here. https://www.musculardystrophyuk.org/about-muscle-wasting-conditions/information-factsheets/conditions/alert-cards-and-care-plans/alert-cards/.

However Alert cards are not available for all conditions and important to consider having a Medical Alert bracelet/necklace or you could consider using your Mobile Phone as a place to store information about your health.