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Satellite Meetings
Disclaimer
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At the satellite meetings Climb's Executive Director
Steve Hannigan and Pam Davies give a short presentation on the services
that Climb offers its members and users.
Meeting 1 - Birmingham
Meeting 2 - Lytham St Annes
Meeting 3 - Watford
Meeting 4 - Wimbledon
Meeting 5 - Cardiff
Meeting 6 - Nottingham 8 July
Meetings are planned for Nottingham, Leeds, Bradford,
Sheffield, Glasgow, Edinburgh dates/venues to be confirmed.
We are also in discussion for meetings in North Wales and
Northern Ireland.
Questions
asked by Climb
What services do you want
Climb to provide over the next 3 to 5 years.
What can we do
that would have made it better for you that we can change and make it better
for future service users.
Should we
continue to fund Nurses/Dieticians (note Climb Nurse funded at Birmingham
Childrens Hospital)
Comments/Reponses
Location (Meeting No)
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Continue to fund a specialist professionals (Nurses and/or
Dieticians)
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1,2,3,4 |
| Research
needed in all areas including funding specialist professionals |
2,3,4,5 |
| Raise
Awareness with both IMD
and non IMD
Professionals |
1,3,4,5 |
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Training for
midwives and the other nurses.
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1,2,4 |
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Awareness
campaign for adults including new services for adults
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1,2,3,4 |
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Services
for Adults going through transition and beyond, make this a priority
-
living into adulthood
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education
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social services
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become more visible let people
know what we
actually do
-
internet forum for adults
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transition (staying
with
paediatric services)
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1,2,3,4,5 |
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Translation – We need to look at Welsh, Polish, Hindi, Punjabi, Urdu
but we must not make the mistake of leaving out specialist
professionals. |
1,2,5 |
| More satellite
meetings needed on an annual basis. |
1,3,4 |
| Do not include
a members only section on the website as this may exclude service
users in need. |
1,2, |
| Climb needs to
put a comprehensive list of what services we offer on the website
and in the Climb Update. |
1,2,4 |
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Review of
services for those with an undiagnosed condition. Focus on
forum, update articles etc. |
1,2 |
| Maybe article
needed some point about adoption and genetics, also importance of
tissue autopsy to keep for future generations or other babies born –
keep tissue to test for genetic fault or comparison. |
2,4 |
| Clarify the differences between
research, galaxy, membership etc so that families area aware of
where their donations are going. |
3,4 |
Steve liked all
the ideas and will look at building them into the Business Plan.
Also suggested
that an article in the nursing times and others specialist mags could by
‘fronted’ by the Climb Nurse to help ensure inclusion. We will continue to
ask the same questions at each satellite meeting to ensure parity.
Responses/Comments will be added to above.
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