The Corridors of Power.
First Meeting of the Northern Ireland Working Group on ME, 28/10/09.
Having been admitted to the corridors of power - for once - ME patients in Ulster did not miss the opportunity to have their say.
NIMEA was determined that patients distant from Belfast should be represented. As a NIMEA Group Contact, Shelly Gilfillan made a 180-mile round trip from the farthest reaches of Co. Tyrone (4 hours driving in total), to speak for ME patients west of the Bann.
She had quite an impact on proceedings:
Horace: You drove yourself from Tyrone this morning?
Shelley: Yes.
H: How long will it take you to recover, after today?
S: A week.
H: And the same would apply to all ME patients in Co. Tyrone if they had to travel to Belfast to access specialist ME care?
S: Yes.
H: You and your son both have ME?
S: Yes. My son is severely affected and bedbound.
H: How will you manage to look after him this week?
S: Fortunately my husband has a day off work tomorrow.
By this time the Chairman of the Working Group had got the message, and was hastily assuring Shelley that the proposed new Belfast ME Clinic would have an outreach centre in Co. Tyrone.
Shelley: When will we have the outreach clinic?
Chairman: It’s under active consideration.
S: Who are you going to send?
C; (Stammering a bit). Staff from Belfast.
S: But you said you hadn’t got any staff yet.
C. (Flustered now) Well, we will have to train them.
Having got properly into her stride, Shelley then began a demolition job on the Examining Medical Practitioner who came to assess her son for DLA …
For the record, the Corridors of Power are a collection of Portacabins which have seen better days, with a well-fed resident white tabby. The civil servants were a friendly bunch. The DHSSPS Director of Secondary Services, who chairs the Group, handed out tea and biscuits in person. AND he collected the empty cups from the tables afterwards. The same couldn’t be said for most of the NHS professionals present, who were rather stand-offish. Or maybe they were just paralysed with guilt.
More when I emerge from boom-and-bust.
H.
First Meeting of the Northern Ireland Working Group on ME, 28/10/09.
Having been admitted to the corridors of power - for once - ME patients in Ulster did not miss the opportunity to have their say.
NIMEA was determined that patients distant from Belfast should be represented. As a NIMEA Group Contact, Shelly Gilfillan made a 180-mile round trip from the farthest reaches of Co. Tyrone (4 hours driving in total), to speak for ME patients west of the Bann.
She had quite an impact on proceedings:
Horace: You drove yourself from Tyrone this morning?
Shelley: Yes.
H: How long will it take you to recover, after today?
S: A week.
H: And the same would apply to all ME patients in Co. Tyrone if they had to travel to Belfast to access specialist ME care?
S: Yes.
H: You and your son both have ME?
S: Yes. My son is severely affected and bedbound.
H: How will you manage to look after him this week?
S: Fortunately my husband has a day off work tomorrow.
By this time the Chairman of the Working Group had got the message, and was hastily assuring Shelley that the proposed new Belfast ME Clinic would have an outreach centre in Co. Tyrone.
Shelley: When will we have the outreach clinic?
Chairman: It’s under active consideration.
S: Who are you going to send?
C; (Stammering a bit). Staff from Belfast.
S: But you said you hadn’t got any staff yet.
C. (Flustered now) Well, we will have to train them.
Having got properly into her stride, Shelley then began a demolition job on the Examining Medical Practitioner who came to assess her son for DLA …
For the record, the Corridors of Power are a collection of Portacabins which have seen better days, with a well-fed resident white tabby. The civil servants were a friendly bunch. The DHSSPS Director of Secondary Services, who chairs the Group, handed out tea and biscuits in person. AND he collected the empty cups from the tables afterwards. The same couldn’t be said for most of the NHS professionals present, who were rather stand-offish. Or maybe they were just paralysed with guilt.
More when I emerge from boom-and-bust.
H.
No comments:
Post a Comment