Advocacy

We can support you at Multi-Disciplinary Team (MDT) meetings, which are sometimes called Team Around the Family meetings.

At these meetings we help to ensure you are receiving the correct amount of support from the statutory services (Social and NHS provided services). We can also help with input into the Education Health and Care Plan (EHCP) for your child.

Our Support Services team can also help to advocate for you to ensure you receive the correct and appropriate amount of care and respite, ensuring that this is worked out on a needs-led basis rather than a generic Care Package.

We can advise you on the different benefits that are available and how any changes may affect you. We provide help and support in completing these often-complex forms. Disability Rights (hcan help you further and are experts in this area.

Home visits

We can arrange to visit you at home. This can be very helpful, as a face to face meeting provides support and reassurance whether you have just been diagnosed or need some extra help after having been diagnosed for some time.

Visiting you at home can be especially useful if you have any problems knowing which equipment can best meet your needs. We can arrange to meet your Occupational Therapist and or physiotherapist at the same time.

Finding a Specialist

We can help you to find a specialist who knows about your condition. We have a panel of experts who we work alongside to ensure you can access the most appropriate medical care.

Equipment & Services

We have compiled information about the equipment and services you may need to care for yourself or your loved one. There are two sections, one for those with symptoms and one for people without.

Education

We can help you get the most appropriate education for your child, this may be due to your child being newly diagnosed or when your child is moving to a new school or starting college. We can provide help and information to the school or college to help them understand your condition and how best to give support.

We can run workshops for school staff to help them to understand the condition and how it affects the person’s daily life.

We often find that when people are diagnosed with a rare disease the unknown can be difficult for those who care for your child in a wide range of settings. Giving providers easy to understand information with a chance to ask questions can be beneficial to all involved.

Transition to Adult Services

This can be a very difficult and scary time for families, as relationships and trust you have built up with doctors and children’s services will change. We provide advice, information and support through the transition from child to adult services.

Transitioning from Children’s services to adult should start around the age of 14 and all professionals involved with the care and support of the young person should start thinking about how to smoothly transition. In healthcare this transitioning normally takes place at the age of 16, however some doctors will continue to see the young person until they are 18, this should be checked with the individual doctors and hospitals.

For those still in education the transition to adult care services is at the age of 18. Most County Councils have a team who support transitions and is included within the 0-25 framework, this is to provide continuity between children’s and adult services.You can find out more about transitions from the National Institute for Health and Care Excellence (NICE) who have produced a guideline (detailing how transitions should work.