Please find a letter below from Claire Edwards, who is delivering our new Exceptional Families project.  The letter explains all about the project and invites you to join us:

Dear Parents and Carers

I am delighted to have been commissioned to work with Kindred Advocacy in the delivery of a new Big Lottery Funded project – ‘Exceptional Families’. The two-year project, will reach out to 600 families of children with complex and exceptional healthcare needs in Scotland.  As you know Kindred provides a range of services for parents and families including advocacy, information, emotional support and opportunities for parent to parent contact. The new project offers all of this but in addition the opportunity to engage with national policy developments.

‘Exceptional Families’ is a partnership between Kindred Advocacy and the National Managed Clinical Network for Children with Exceptional Healthcare Needs (CEN). The focus for CEN is families of children with enteral/ parenteral feeding (‘tube feeding) and/or ventilation/CPAP as these are the children with the highest healthcare needs in Scotland. There are estimated to be 396 children nationwide requiring this level of medical support. However, the project is interested in the experiences of families from the wider population who have of children with complex needs (estimated to be 7200 in Scotland)


CEN has been successful in engaging professionals including hospital and community consultants, specialist nurses, physiotherapists and other allied health professionals, hospice staff, and social work colleagues.  However, it has struggled to maintain engagement with parents and carers. As you will know the pressures of your caring role leave little time and energy for additional activities as well as the geographic challenges of travelling for meetings from across Scotland.

Parents and carers have played a vital role in contributing to the development of the CEN educational materials, being interviewed about their experiences and appearing in videos which have been used to support the professional development of practitioners across Scotland.

With this project we want to draw on your experiences to directly influence policy development and ensure that families voices are heard and acknowledged. CEN offers an important platform for parents and carers to inform decision-makers about the impact of policies and practice on family life at a national level. We want to strengthen the relationship of CEN with families and help the network to engage with you in ways that are mutually beneficial.

CEN was launched in March 2009 with the aim of strengthening specialist services for children with complex and exceptional healthcare needs in Scotland. There are currently over 1,500 people involved in the network.  Kindred has been closely involved with CEN for the last seven years, with representation on the Steering Group and presenting at the national conferences. Please visit the CEN website to learn more about what the network offers: www.cen.scot.nhs.uk

What are we going to do?

As part of that process we want to build your confidence in speaking out and engaging effectively with practitioners and we aim to do this in a number of ways –

  • Producing a quarterly e-newsletter, sharing news and information
  • Establishing a steering group of parents for the project
  • Providing news and information on the Kindred website and through social media
  • By coming out to your area and delivering a series of seminar/consultations (in six locations across Scotland each year)

Interested in being part of the project steering group?

Our steering group will ideally have 8 – 12 parents of children with exceptional healthcare needs as members.

We would like to ‘meet’ four times a year with email/phone contact between meetings to hear your ideas, thoughts and feedback on a range of topics as they arise throughout the year.

We are very aware of the challenges you experience in trying to participate so whilst we would like the first meeting to be a physical one – in an accessible location and will meet childcare and transport costs – parents will be able to join the meeting through skype or FaceTime and all future meetings will be virtual.

A key part of my role is to facilitate these meetings and to get input from you by email, telephone and in person, as required.

Interested? Email: [email protected] or text: 07713355460

The seminar programme

We will be working with CEN to establish the most useful and popular topics for the seminars which will include information sharing and parent-specific training and workshops.  If you are interested in being part of a presentation we’d love to hear about it but the main opportunity is to have time to discuss your experiences of the topic and have time with other parents.

These seminars will also be a forum for consultation on policy development, giving you the opportunity to express your views and ideas and by bringing these together with those of other parents we can present these to government at local and national level.

About Kindred

Kindred is a parent-led organisation.  We ensure that 50% or more of our trustees are themselves parents of children with disabilities.  Twelve of our seventeen staff are parents of children with disabilities and long term conditions.

Kindred was established in 1991 and for the last 25 years we have ensured that every decision about service and direction are taken from a parent perspective. in addition to advocacy and information we are very aware of the emotional support needs of families and the impact on parents and siblings of caring for a disabled child.

We have also worked hard to develop professional standards in all aspects of our work including external HR and Financial Management, monitoring and evaluation and governance.  We are a unique organisation with high standards of delivery, whilst remaining very much in touch with the needs of people using our service.

About me

As the parent of a teenager, Joe, who has Down’s syndrome and autism I share the ‘lived’ experience with you of caring for a disabled child. I have been fortunate to be able to work outside the home for many years and this has definitely helped me personally in terms of my mental health. Joe is now in the process of transition from high school into the world of self-directed support!

Through my personal relationships and professional role I have met literally hundreds of parents and have a connection through our common experiences as parents and carers.  I  been working with other parents and professionals in the field of childhood disability for eighteen years including eight years with SNIP (as Kindred used to be called) as training manager and then Director until December 2008.  I also worked closely with CEN for several years producing educational materials including films such as ‘The emotional impact of tube-feeding your child’, which can be seen on their website.

I work as a trainer, facilitator, coach and currently am carrying out the evaluation of the Rank Foundation’s community development project in Dundee over three years (2016 – 19).  I am a qualified counsellor and worked as a therapist in Glasgow for many years. Whilst I no longer practice as a counsellor my therapeutic training and psychosocial understanding informs all of my work.

In partnership with:

 

We gratefully acknowledge the support of the following funder: