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Former Duncan Hospital polios gather to celebrate
Over 600 people gathered on a Rangitikei farm near Hunterville to launch a new book “Otiwhiti Station”, the story of the Duncan family. Many Polio survivors owe their recovery to the Duncan Hospital, which was started by Mr & Mrs T.A. Duncan and funded from the proceeds from the Otiwhiti Station farm in the 1940s and 1950s.
Former Duncan patients and staff mingled with the Duncan family members, friends and neighbours to hear speeches by David Duncan and others, to inspect the old Otairi homestead and gardens, and to enjoy refreshments. But the Polios spent much of their time catching up on each other’s news and reminiscing on their days at the Duncan Hospital.
The book: Centering on Tom (T.A.) Duncan, and his wife Jeannie, the founders and driving forces behind the Duncan Trust, Otiwhiti Sation chronicles the fortunes of the farm from the turn of last century to the present day, and also charts the story of the Duncan Hospital. Part family history, part social and farming history, Otiwhiti Station is an engaging look at a New Zealand family that is not only deeply connected to its local community but has also made a difference to the well-being of the country as a whole.
You can watch a YouTube video of this occasion (32 min) here
You can buy the book on line from Paperplus ($49.99 Freight Free) at
http://www.paperplus.co.nz/book/Otiwhiti-Station?i=9781869795382
Immunisation Conference in Rotorua
The 7th NZ National Immunisation Conference was held in Rotorua from 18 – 20 August, a few days after our own conference. Noel and I spent Friday 19th there as exhibitors with our PPSS display and information table. The other exhibitors were pharmaceutical companies and we felt a little out of place. However it was extremely valuable that PPS Society was represented at such an event. Many people stopped, talked and picked up pamphlets. Several told us of their auntie, mother, brother or other family member or friend who had polio.
I was able to briefly introduce myself to Dr Paul Hutchison MP, who gave the opening address and who chaired the recent parliamentary select committee inquiry into completion rates for immunisation. I was asked if I would give my polio story in the afternoon session. There were 280 delegates representing Ministry of Health, DHBs, health care workers and others who are involved in the immunisation profession. But undaunted by them I spoke from my heart, and apparently I was well received. It certainly was different from the previous presentations of charts, graphs and medical studies, and a great opportunity to affirm our endorsement of immunisation to prevent polio in NZ.
New Pamphlet about Post Polio
A new pamphlet about PPS was produced for the recent Brain Day, and this is now ready for download here
Support Groups In The Auckland Super City
In May a meeting was held with some of our National Post Polio members, and others in the Auckland area. Anne Mace, vice president arranged and hosted the event for Edith, National President, to speak about the possibility of forming two support groups in the Western Suburbs and North Shore. She told them about the lobbying activities of the National Board: Orthotics, QE Health in Rotorua, and the up-coming conference in New Plymouth. Noel explained the media side of our PPSS: website, pamphlets. Anne spoke about immunisation and answered questions. Several people expressed interest in working with Anne to bring these support groups into reality.
National Orthotic Conference In Taupo
As a result of PPSS Board lobbying providers of orthotics, Edith was invited to speak in May at the NZ Orthotic and Prosthetic Conference in Taupo. About 35 people attended her session which received mixed reactions. Some openly admitted services needed improvement, some were defensive and said they hardly had any people with polio needing their services, and others were really doing their best considering the difficulties their own organisation faces.
The presentation included a section on Post Polio Syndrome and the reason why polios need good orthotic services. Our PPSS recommendations were covered in detail and were distributed in the hope that they would be actioned by providers throughout the country.
There is still much to be done to see that polio people are provided with safe and quality orthotics (braces, shoes, other supports) and timely appointments and follow up. As a Board we need to hear back from you if service provision has improved or not.
Post Polio Presentation to the Waikao DHB's Agewise Seminar (25 March 2010) At this seminar our Post Polio Support Society was represented at a workshop on the subject of "An Enabling Future For Older Disabled". A very professional powerpoint was put together and a 20 minutes presentation by the president Edith Morris was given. She networked with DHB personnel and distributed post polio syndrome material. It was a good opportunity to bring awareness of our PPS Society.
You can download the powerpoint in PDF form here, and listen to the presentation in mp3 here
PPSS Represented at Brain Day in Auckland (19 March 2011)At the Brain Day Community Expo, our Post Polio Support Society had a colourful stand displaying pamphlets, posters and a banner. Members with polio “manned” the stand and were ready to answer any queries and to talk about polio. Two newly printed informational pamphlets, one a postcard and the other a general outline of Post Polio Syndrome were pass out to the general public. 3,000 visitor viewed the various stalls and it was an excellent environment to bring awareness of polio and PPSS.
When asked if their children where immunised against polio, it was surprising to hear the number of people who had no idea whether they were or not.
Comments:
- There were absolutely oceans of people, tons of children and their parents.
- The best atmosphere and best attendance in the 6 years of running Brain Day.
- Everyone manning the stand thought it was very worthwhile being involved in.
Thanks to Anne Mace and team for a well planned and exciting event.
Visit to PPSS support groups in the lower North Island (12 - 19 March 2011)
This March Edith Morris, the National president of the Post Polio Support Society visited Levin, Lower Hutt, Masterton, Wellington, Kapiti and Palmerston North Support Groups.
- to bring awareness of Post Polio Syndrome
- to contact survivors of the polio epidemics before the Salk/Sabin vaccinations were released in New Zealand
- local post polio support groups hosted the meetings and they invited people who had polio, their spouses, family members and providers of care services.
Some results from this trip were:
- Many new people attended, including several adult children of polio parents.
- Leaders of the support groups were challenged to continue holding regular meetings.
- Ten people became new members.
- The National Board received vital feedback from these 6 support groups.
Regional representative Dianne Mathews also attended to build closer liaison in the area.
The president concluded that it is NOT a time of decline for the Polio Society but a time for locating more people with polio who don't yet know what we can offer them.
PPSS President Edith Morris visits the Office of Disability Issues (25 Feb 2011)
While I was in Wellington to attend the National Health Board meeting, I had a meeting with the Office Of Disability the next day. It was a courtesy call mainly, but I was able to present some of the issues our members face. The meeting was with Jan Scown (Director, ODI) and Judy Small (ODI Analyst) and we spent an hour together.
I felt the ODI could benefit with an update on the problems we have with Orthotic provision, with the need for a Centre of Excellence (expansion of treatment at QE Health Rotorua to include all post polio patients nationwide), and with efforts made to contact with Maori who had polio.
Some clarity around these points was discussed.
- PPSS is uncertain if it is the dwindling DHB funding or the MOHD contracts on behalf of Government that is the cause of the inconsistent and reduced service access and delivery.
- Is there a national register of people who contracted polio. Was there ever a register? Polio was a notifiable disease. Where is that register now? Which governmental department or national Health department would hold that register? No conclusion or suggestions came out of that discussion.
It is hoped the ODI will advocate on our behalf with the Ministry of Health and Disability on these concerns, to find a way forward for our causes, and to report back to us. I later sent the ODI a copy of the recommendations which Anne Mace presented to Orthotic Centre NZ Ltd for their follow-up. It was good that face to face contact was made with ODI personnel. Let's see what come from it.
Edith Morris.
Post Polio Support Society supports QE's presentation to the MOH (24 Feb 2011)
Dr Liz Falkner and Edith Morris were part of a team supporting QE Health's presentation to the Nation Health Board in Wellington on 24 February 2010. Here is Dr Liz's report of that meeting:
No 1 The Terrace, Wellington is the impressive address of the National Health Board, which now directs all NZ Health spending. On 24th February 2011, Director Chai Chuah heard our case for a Centre of Excellence, and really seemed to listen.
We all know of the incomparable residential programmes Dr John Petrie runs at Queen Elizabeth Health (Hospital), Rotorua; their expertise contrasting with the abysmal lack of knowledge shown by most doctors.
QEH is threatened by lack of funding, with District Health Boards unwilling pay the cost for their patients to be treated out of their own area. Peter Sharplin, enthusiastic young General Manager of Queen Elizabeth Hospital, presented a compelling case for National funding. As well as post Polios, their main patient group is severely affected arthritics. He was supported by QE's Dr John Petrie, by the Chief Executive of Arthritis NZ, and by Post Polio's President Edith Morris, and Medical Advisor Dr Liz Falkner.
We were very fortunate that the Rotorua flight was delayed, as it gave us time alone with Mr Chai Chuah to explain polio and its after-effects. This was all clearly new to him, and for the first time in speaking with Ministry of Health officials it felt as if we were making an impact. He even gave our meeting an extra hour of his time.
Disappointingly, Mr Chuah was unable to agree to National Funding at this time, but he gave very clear guidelines for a way forward. For Polio, it is involvement with Prof Des Gorman of Health Workforce New Zealand. He demands clear "Clinical Pathways" and "Models of Care" for polio management. He cited all our cardiac surgeons managing to agree on protocols to form the National Cardiac Service.
President Edith was vehement that delays must not allow QEH to fold. Liz Falkner suggested immediate funding for a pilot scheme to analyse the clinical and cost-saving benefits for polios.
It was a worthwhile meeting, but has it advanced our quest for for a Centre of Excellence? Who knows?
Dr Liz Falkner, Medical Advisor PPSS (Inc)