Newsletter February 2013

Adult clinics

The specialist adult clinic at Bristol has struggled to get established, in the main due to a lack of referrals. The situation at the Royal Free Hospital in Hampstead is making a little more progress. The specialist vascular malformation clinic has recently moved from a Monday to a Thursday, so if you have a future appointment at the clinic and it is for a Monday, do contact the appointments department and get it changed as we are aware that not every family has been informed of the change of clinic day. Although an Orthopaedic consultant is not always present at clinic, if you have an orthopaedic problem you can ask for an orthopaedic consultant to be at clinic. Referrals are to be made for the vascular malformation clinic under Professor Hamilton.

We are still striving for a full multidisciplinary adult clinic as some of you have enjoyed at GOSH. If you are moving from paediatric to adult care - we would like to hear your experiences

Membership

Currently we have 49 families listed in the Directory split, 24 of whom have a
Proteus/Proteus /Cutis Marmorata or Proteus associated diagnosis, 23 who have a Klippel Trenaunay diagnosis and 2 with a diagnosis of Hemi-hypertrophy. Of those who choose not to be listed in the Directory, almost all have a Klippel Trenaunay Diagnosis.

Rainbow Parent Carers Forum - There is a Parent Carers Forum in every locality to promote and represent the voices of parents and carers who have a child with a disability. As well as providing specialist play sessions and, for example, in Nottinghamshire, swimming and ice skating sessions, forums can also provide support with education, social and health care issues. There is also support for families in their personal budgets in partnership with their local authority. Go online at www.cafamily.org.uk to find details of the patient carer forum in your local area.

fasd trust UK wide - a parent and child term time group for pre-school children with special needs. Playskill is run by a skilled team including a physiotherapist, occupational therapist and speech and language therapist. Siblings are welcome. They also run parent breakfasts and training events for families. Contact tanya@playskill.org for further details.

A Big Thank you to everyone who has supported us either by Private Donation, Donations in memory of a relative or close friend, a fundraising event or by existing Standing Order -without you we would not be able to provide the support and help that families living with Proteus and KT need.
Really looking forward to meeting up friends both old and new in Greenwich in June, till then, keep healthy and happy and remember, if you need a chat or just someone to listen, we are just at the end of the phone…..

Jean