Long Term Conditions Alliance Scotland
Godsal met with Nancy Greig of Long Term Conditions Alliance Scotland recently to discuss how our charity might be able to work with them. You can read her report of that meeting below:
Meeting with Nancy Greig of LTCAS(Long Term Conditions Alliance Scotland), Friday 9th July
I had a great meeting with Nancy Greig and was able to introduce Cavernoma Alliance UK by discussing the condition and all its varied permutations and what issues these can raise for all sufferers. Nancy is really personable and helpful.
www.ltcas.org.uk/policy_manifesto.html
LTCAS is an organisation that has resources to link to and access other member organisations (similar to National Voices [of which CAUK is a member] in England). LTCAS hold regular "meet the leaders" networking events for all their member organisations which could be invaluable for linking up CAUK with others, making us known, influencing and questioning national policy etc. They are government-funded (Scottish Government) so work in line with them to present various national strategies for care and self- management, including administering the £2m Self Management Fund on their behalf. Self Management is therefore a big theme of their work and I think aspects of this would be really useful for a Glasgow CaverHub, for linking information for people with cavernomas to some of their other member organisations. Some ideas that Nancy and I discussed with regards to connecting CAUK members to other information are:
- links to epilepsy orgs and making them aware of CAUK
- how to deal with pain & what kind of management help there is available to access
- links to CAB advice with regards to support, benefits available
I gave her our literature to have in their library and have also emailed links to the PDF's on the CAUK website, so that these can be made available through their website and newsletters.
We also discussed literature that CAUK provides to its members and whether CAUK need support or help in formalising some sort of `welcome pack' for new members? This, and access to other training, is something they can also help us to develop.
Their facilities are great, with several different-sized meeting rooms, and a drop in area where members can use computers free of charge. The rooms are available free of charge to CAUK (it's dependent on levels of funding and income). However weekend hires are charged at a daily rate of £200 to pay for staff time (the building isn't normally open at the weekend). This may prohibit a Glasgow CaverHub being held here, unless we fundraise for this separately?
Godsal
Local Coordinator