Searching for a cure, Improving lives

Report on the delivery of an extension Transition Project to support families of boys with Duchenne in Morpeth 2017

Posted on: November 8th, 2017 | 0 comments

By Celine Barry, Takin’ Charge Co Founder

From May to October 2017, I have worked alongside the Newcastle branch of ‘Contact A Family’ specifically, the Regional Manager, Jacqui Adams and Helen Bailey the Parent SEND Advisor, to deliver Transition workshops on Preparing for Adulthood, Person Centred Planning and Legal Issues in Transition.

I have supported families of young people with Duchenne in Transition to attend these sessions and was able to contribute Duchenne specific information re: Transition to parents and a range of professionals.

I have met with School managers and teachers to discuss the Transition Support process for individual pupils and have attended Education Health and Care Planning reviews with families in schools, offering advocacy and advice to them about the process.

I have met with families and young people in their homes at their own convenience to do individual person centred planning sessions to explore the issues for them going into adulthood. In this process I supported young people and their families to articulate clearly their thoughts and aspirations for the future which they are invited to do as part of the EHC Plan process.

I then supported them to think about the planning that would be needed in all 4 areas of the plan :

  • education/training/employment
  • independent living including housing
  • friends/relationships /community inclusion
  • Health

if they were to achieve their goals.

From these sessions, I compiled the parental and young people contributions to the EHC Plan process and supported them to submit this to the Local Authority, Northumberland.

I have provided ongoing advocacy and support to families on receipt of their draft EHC Plans. Many of which did not include some of the key elements that the young people and families had requested.

I have provided ongoing support to families in what can be a very adversarial system supporting them to challenge the draft EHC Plans that have been allocated.

As part of this advocacy I have provided training to staff in one school on Duchenne and ‘Preparing for Adulthood’. The focus of this training was to inform staff about Duchenne and encourage them to think about their role in supporting young people to develop the skills and have the opportunities they need to be as independent as possible.

Also, as part of offering advocacy support, I, along with Jacqui Adams, Regional Manager for Contact a Family on 26th September, 2017, met with Samantha Barron, Partnership Development Manager for SEND & Clinical Officer, Northumberland CCG Wellbeing and Community Health Services Group to give her professional feedback on the EHC Plan process in Northumberland.

She has acknowledged our contributions to this process and as a means of continuing to influence the roll out of this important statutory process, she has invited at least one of our families to contribute to a formal evaluation of the process to date with the intention that the experience of our families will directly influence change in Northumberland.

In this I have worked with services in Northumberland to explore how they can be more personalised and deliver better outcomes for young people with complex health and care.


Feedback from  families:

Vici Richardson, mother of Zak

“I have found the support of Celine invaluable both through the taking charge project and then the extended work she has done with us.

Through the support planning she has done with Zak and our family we have been able to identify some very clear outcomes that will ensure Zak has access to education , training opportunities as well as social interaction. She has also done a lot of work with us on the preparing for adulthood document for his EHCP and outlined outcomes in terms of his health.

I feel Celine has provided us with a robust document and plan to go with to Zaks review and hopefully be approved by our local authority.

I have been thankful for her attendance at Zaks last EHCP meeting. 7.11.17

Lindsay Maxwell, mother of Jack

“Working with Celine has been invaluable to both Jack and myself. Prior to working with Celine, Jack had a very unsatisfactory EHCP which was very basic and did not plan for Jack’s future. Working with Celine informed not only myself, but also Jack’s SENCO and the LA SEN officer of the importance of ensuring that Jack’s ECHP included details of Jack’s goals of the future and to set short, medium and long term objectives to make sure these goals can be achieved.

The planning process she went through with Jack enabled Jack to articulate his views and hopes for the future so that these could be included in his plan. Having this process carried out by an independent person, away from school allowed Jack to be much more open and confident in his opinions.

Celine also spent time with the SEN department in Jack’s school in order to educate the staff about DMD and the fulfilling life that sufferers can still lead. I think this was a huge eye opener for the staff and has enabled those working with Jack on a daily basis to better understand him.

I believe that Action Duchenne providing this type of support on an ongoing basis would greatly benefit all families going through the EHCP process. Without such help, I believe many of the EHCP’s produced will be as unsatisfactory as Jack’s initial plan and will fail the young people involved”

For more information contact

Leave a Reply

Your email address will not be published. Required fields are marked *


Support Action Duchenne with a monthly or one off donation



View our events

View All Events


Join the DMD registry for access to clinical trials


Action Duchenne launches new Research Strategy for Duchenne muscular dystrophy

November 17th, 2017

  Action Duchenne, a leading UK-wide patient and parent-led organisation for Duchenne Muscular Dystrophy, is

Tell me more

Long-term microdystrophin pre-clinical work, moving towards a potential therapy restores muscle function in canines

July 26th, 2017

Promising microdystrophin pre-clinical work, moving towards a potential therapy has shown to restore muscle function

Tell me more

Nominations open for Muscle Dream Rugby Experience

January 15th, 2018

Join the Muscle Help Foundation at Twickenham Stadium for the England v Ireland 2-day Muscle

Tell me more

Duchenne – How do you measure a life?

Living with Duchenne – an animation

Taking charge of Duchenne

wordpress counter

Stay informed with regular updates from Action Duchenne