Newsletter February 2013If you would like to be put on the mailing list to receive our Newsletters please mail your details to email@example.com.....meanwhile, here are some snippets from our latest Newsletter:
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
Currently we have 49
families listed in the Directory split, 24 of whom have a
News and Views
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 firstname.lastname@example.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
Standing Order -without you we would not be able to provide the support
help that families living with Proteus and KT need.
Secretary: Jean Harrison, 10 Overhill Road, Weeping Cross, Stafford, ST17 0QA
01785 661263, email@example.com