 |
|
|
 |
|
West Midlands
Regional Co-ordinator:
Teresa Culverwell
"Hello, My name is Teresa Culverwell. I have a 10 year old with complex needs who had a nasogastric tube from about 6 months old and who then went on to a MIC gastrostomy.
|
My husband’s name is Martyn, and our other son, Anthony, is 16 and into scratch DJ’ing competitions.
|
| |
|
|
| |
We live in Tipton, and I work part time as an Information Officer in Dudley (for KIDS Orchard Partnership where we provide services for disabled children aged 0-19 and their parents/carers).
PINNT and its members have provided the family with a lot of support over the years and I think it’s important to bring together parents/carers and patients, both younger and older, to be able to feel “normal” and that there is a light at the end of the tunnel.
I hope to be set up some more meetings around the West Midlands so patients and parents/carers can meet up."
| Date of meeting: |
|
23rd November 2004 |
| Venue: |
|
Sandwell Hospital, West Bromwich. |
Attendees included a Sandwell, nutritionist, a Homeward Nurse, two School staff and a parent with child with a gastrostomy. Although the number attending was very small there was a good discussion.
The question of respite for parents was raised – parents can often receive respite unless the children are on artificial nutrition in which case there is none available as care staff are not trained, or else parents have to make alternative arrangements such as ensuring the child is fed first before care staff arrive. The school staff also mentioned however that not all their staff are trained, they are only shown once, and sometimes after training they are still faced with different pumps, different giving sets, syringes and equipment which can make it a bit daunting. Fay Shelton, the Homeward Nurse, mentioned that training is available at any time to their patients, carers and careworkers, and is free.
The Homeward nurse (Fay Shelton) also offered to distribute any flyers about West Midlands PINNT meetings to patients on Homeward’s database. The nutritionist also felt there was a need for her patients to get together at a PINNT meeting.
I will be in touch with the Sandwell nutritionist and the Homeward nurse, both of whom were keen to distribute any flyers about future PINNT meetings in Sandwell and the West Midlands respectively. (There are 120 adult patients in Sandwell and over 40 children in Sandwell). We were quite surprised that despite the number of children patients in Sandwell only 2 to 3 of these were in Special Schools, with the remainder in mainstream!
Teresa Culverwell
|
|
