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September 27, 2012 / angelavbolton

Bri ‘Café Conversation’ with Minister for Disability

The view from our living room window, Christmas 2010. Photo: Robert Bolton

The ‘World Cafe Converstion’ arranged by the brain injury support and advocacy group Bri (http://www.briireland.ie/) on Wednesday 26th September 2012 was (very briefly) attended by Kathleen Lynch, Minister for Disability, Dept. of Health; Dr Aine Carroll, National Clinical Lead, Rehabilitation Medicine Programme; a gentleman called Chris Deasy of the Neurological Alliance of Ireland (NAI), and was facilitated by the RM Programme Manager Valerie Twomey.

Unfortunately, Bri described the event on their website as follows: “Get your voice heard from the HSE about rehabilitation services in Ireland… The consultant heading the HSE’s national clinical programme for rehabilitation will meet with people with neurological conditions and their families in the Royal Marine Hotel… We encourage Bri members to attend!”

It wasn’t quite like that… Valerie introduced herself, said Minister Lynch and Dr Carroll would join us in due course, and said that the ‘Conversation’ was part of the Programme’s way of opening up discussion on rehab as part of the National Strategy for Neuro-Rehabilitation – of which we would be hearing more as the months go by.

She explained that the seating arrangements had been deliberately ‘mixed up’ so that each table would have a diverse interest content. I was beside a chap called Keith from the Parkinsons Association and a physiotherapist named Heidi who I think worked for MS Ireland.

The guest speakers spoke briefly, welcomed us, and left.

We were to be asked questions, one person at the table to be nominated to write down the main points discussed and these would be submitted to Valerie.

The first question was ‘what is good about rehab services in Ireland?’ and Valerie wrote down five bullet points, hard to extract from what I could see but commitment and ability of frontline staff was one I remember.

The next was ‘what is not good about rehab services in Ireland?’ and that had to have three pages on Valerie’s flip chart.

The list – as much as I could hear and see – was:

  • Limited access to rehab
  • Shortage of neurologists
  • Too many voluntary groups replacing HSE services
  • Lack of integrated services
  • Setting the bar too low for strategies
  • Lack of recognition and support of primary carers/lack of training for same
  • Too much competition for funding
  • Need for advocates
  • Rehab seen as ‘aftercare’ and not a lifelong need
  • Lack of medical cards for long-term conditions
  • Over-emphasis on drug treatment
  • No plan/model for Parkinsons
  • Transport limitations
  • No cohesion in organisations – no one spearheading for all, no umbrella organisation
  • HSE policy not patient-centred – the treatment given is policy driven: several people made the point that if it was patient-centred everything else would fall into place

My own list was:

  • No information or direction/guidance for family at onset of injury
  • No timely access to proper assessment
  • Different protocol from UK/Continent for timing of assessment and rehabilitation
  • Rigidity in criteria/ageism discrimination/no flexibility
  • No consistency in care
  • Virtually no slow-stream/long-term/long-duration rehabilitation facilities
  • Strict limitation on rehab places in general

Paul Barrett, a director of Bri, claimed Ireland was medieval in it’s approach and we were bottom of the league table in the entire world (something the NAI complained about some time ago after their conference), and felt the HSE ‘policing’ themselves and collating this material could very well be non-productive. For the first time in my life I said ‘hear, hear’.

The last question was ‘what one thing would you change about rehab in Ireland?’. Paul Barrett again spoke, saying that the question was insulting as so many things needed to be changed and so many needs were not being met. This was seconded by a lady who had to use a communication device to make her point.

One lady said: ‘People who think the National Rehabilitation Hospital is Nirvana should think again’, explaining that her husband got ‘only three’ sessions of OT, three physio, and three Speech & Language every week, and they would be curtailed or stopped if he became distressed or upset, so he wouldn’t necessarily get them.

Another lady disagreed, said that her husband ‘went into the NRH flat on his back and got everything he needed’.

In my opinion, there was tension building as attendees seemed to become frustrated at what then appeared to be a PR exercise on the part of the distinguished guests and therefore the HSE. Valerie explained that all the points made would be collated and submitted to Dr Carroll who would then discuss it with Minister Lynch, and invited us all to submit any notes we wanted, not just the notes taken by table rep. There would be another Cafe Conversation in 2013 and we could check progress on the rehabilitation medicine page on hse.ie

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