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Day three

DAY three opened with Dr John Tierney summarising the impacts of information on him so far. The presentation that resonated with him most was lived experiences of older people with Post Polio Syndrome (Nicola Heath) – “that’s how it is for us”. The new ideas that impressed him most came from Marmaduke Loke (pictured above left - Tessa Jupp, RN, Polio WA, right). “It is exciting to live in this century of carbon fibre technology. Gordon Jackman is three inches taller. There’s hope for me yet”. (Turned out Mr Jackman wasn’t wearing his new orthotic that morning, still coming to terms with it!)

He paid tribute to New Zealand’s full frontal assault on the health system, pushing boundaries to better serve polio survivors. They had invited Marmaduke Loke to train NZ orthotists for example.

Another important session Dr Tierney said, was William de Mayo on sleep as a trained behaviour. He learned he could put on his CPAC machine while watching television and then find it easier to sleep at night.

Dr Antonio Toniolo’s long term research sponsored by Polio Health International, though in the early stages shows traces of the virus in the cells. This could prove to be a trigger for Late Effects of Polio, Dr Tierney said.

Key ideas: Minister Skinner’s integrated care movels. While NSW has the Mt Wilga Private Hospital polio clinic, it was unaffordable for all. A new model had been started ‘on the hoof’. The Minister had even identified a bright bureaucrat who can help get it going, he said.

Mary-Ann Liethof spoke about future proofing post polio services. “There is a long way to go before polio survivors can feel confident in their reception.”

Joan Headley spoke about PHI’s role to “honour health and hope, not hopelessness”.

PHI has an excellent website including strong clinical information as well as Polio Place, for our stories.

Gordon Jackman spoke further about inviting Marmaduke Loke to NZ with his “tri planar model that aligns our bodies in the way designed. The aim was to embed his knowledge in New Zealand. We are bringing him back”. He talked about NZ’s District Health Board model and a chronic whole of life program. They connect with polios in Taiwan, Fiji, and Queensland. The QE Health model, a not for profit trust, began as a centre for soliders and is turning into a centre of excellent for polios.

(QE Health Wellness Centre at Rotorua is a leader in holistic healthcare. This includes rehabilitation, musculoskeletal conditions and rheumatology, orthotics, physiotherapy, psychology and counseling, medical spa and fitness programmes with local, national and international clients. These are available both through direct public funding contracts and privately).

Mr Jackman spoke about the need to persist in dealing with government about polio “We need to be irresistible”.

The program for the rest of the day featured two hour master classes for health professionals, which polios were able to attend, or especially for polios, a chance to listen to the stories of survivors from countries such as Japan and India.

At this point I hit the wall, dropping in and out of these talks to try and get my brain working again, while posting a blog and downloading pictures on the hotel computers. Tried hot chocolate in the restaurant instead of coffee standing up with the others. The Japanese contingent spoke about having six hopsitals offering polio screening and clinics, while the inspirational Sai Padma Bellana with her husband Pragjnanand Busi, sang to us. She had raised $45,000 for their clinic with her singing.

After lunch we were invited to indulge in Post Polio Service Dreaming. We broke up into tables to come up with ideas for the perfect polio world. As a scribe, I had a small table for writing that was visited by Eddie and Tina Demetri from NSW. Eddie was a former jockey and carer for his amazing wife Tina. Eddie specialised in nicking jelly beans from the Mt Wilga trade stand to keep us awake. They have been Facebook friends for a couple of years. It’s really special to meet such ‘pen friends’ in person.

So we came up with our own little list of needs.

Tina (pictured right) wanted a handbook that included all kinds of useful information for polios to access rather than a government website. You’ve got to know where to go.

Proper assessment was needed too.

A basic understanding from these sessions is where there are polio clinics, like PSV at St Vincent’s, there is more focus on what patients want to achieve with the rest of their lives, how mobile we want to be, where we want to live, and for doctors and others, to actually listen to us. I put on our dream list, better funding for PSV.

Eddie wanted affordable equipment. One of Tina’s back cushions cost $6000.

We wanted to be able to recycle orthotics – the need is out there and most of us have got cupboards full of them. As a carer, Eddie wanted a holiday for them both together. A small recliner was mentioned somewhere too.

We wanted the high cost of water added to the energy and cooling concessions.

An end to doctors having to waste time filling in compliance forms.

We wanted the cost of being disabled assessed – case studies, showing just how much extra it does cost to rely on equipment, modified vehicles, CPAC masks and so forth.

Eddie wanted carers to be able to earn more without affecting the carer’s allowance.

Other ideas:

  • a one-stop shop in each State, multi-disciplinary help for polios with travel allowances to access and on Medicare. Including specialist equipment, hydrotherapy pools, dental care etc.

  • Interdisciplinary case management, collaboration between countries.

  • (Stop portraying people in movies as evil – came in there too!)

  • Client centred service, research units, no age limits.

  • Hospitals with alert systems to identify polio patients and their needs.

  • A post polio hotline. Remote assistance.

  • More hydrotherapy pools.

  • Training in post polio for all medical and allied health disciplines.

  • More support for carers

  • We should all emigrate to Denmark (has the best centre).

  • Make NDIS available to everyone

  • KFC funding polio instead of Rotary

A panel discussed the dreams and the feeling was a Centre of Excellence that specialised in neurological disorders was do-able. Polio is a unique community.

Jill Pickering who had been taking notes, gave a short summary, and undertook to post a fuller version on Polio Australia’s website.

The final session was given by Dr Kerry Highley, author of Dancing in My Dreams, Confronting the Spectre of Polio. This was her PhD thesis and research, published earlier this year. It caused some pain among the polio community for not respecting the contribution of Dame Jean Macnamara.

MC Gary Newton closed the conference, not without emotion. He had done a fine task in keeping us all on track.

We farewelled new and old friends. Polio is a unique community. While it was a wonderful experience, just being among those people who have been on the same journey, no need to explain moments of pain, fatigue, loss of words, daft drive to finish something, fear of small rooms with no windows, being tied down. No need to go on… for a film shared by Polio health International.

“I enjoyed the conference plenary/ies heaps and learned so much,” – Margaret Cooper.

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