Stroke Action Advocacy
rvices. These services are now better resourced than at the height of the boom due to extra funding secured by the evidence provided in our Cost of Stroke in Ireland [link] report 2010 and the advocacy effort that followed its publication.The impact of the increased manpower and ongoing re-organisation of acute stroke services will be a reduction of at least 230 deaths and cases of permanent severe di sability from stroke in 2011 due to the delivery of stroke unit care to a minimum of 2,270 extra patients and thrombolysis to 450 more patients.
This will be achieved through the provision of nine new stroke units and by filling gaps in the core teams of the 19 existing units, together with the 24/7 thrombolysis services in all hospitals admitting acute stroke patients. New clinics will prevent 140 strokes in patients with TIAs.
General Election Campaign
At the start of 2011, we knew an election campaign was around the corner and that this would give us an excellent opportunity to ask the candidates about stroke and to get the main political parties to prioritise stroke in their election manifestos. With the help of Gary Smith, a stroke survivor from Wexford, we developed a postcard of ‘questions to ask your candidates’. We then distributed 5,000 of these canvass cards to our supporters around the country so they would have it to hand when the candidates came looking for votes.
At the request of the Irish Heart Foundation, all the major political parties made commitments to improve stroke services in their Election Manifestos with the exception of Fianna Fail, whose document dealt only with economic, job creation and political reform issues.
In addition, more than 80 candidates signed up to our cardiovascular pledge, which states:
Ireland’s first National Stroke Week
Stroke Watch on rehabilitation
The response so far has been overwhelming, with people’s stories illustrating just how damaging the lack of rehabilitation has been.
These are just a small sample of people’s experiences:
- “I would have to say that initially the services are great but when you leave rehab, depending on where you live, you have a greater, or a lesser possibility of recovery. You are let go and that is basically it. You have to fend for yourself.”
- “When I left the National Rehabilitation Hospital I was happy to be home but I wasn’t by any means fully recovered. When I was discharged all the therapies stopped.”
- “After 8 weeks we were told she had reached her ‘full potential’ and she was transferred to a nursing home where she now resides.”
- “I still need physiotherapy for my left arm. I contacted my doctor to arrange it, but I haven’t heard anything for a year. To keep exercising I have joined a gym. But it is hard to do it on your own; you haven’t got the same motivation.”
- “Access to further rehab has been a non-runner in spite of numerous phone calls. The most distressing part is the complete lack of speech therapy. I feel she would benefit from this as she can now say words but she cannot make a complete sentence. This makes communication very difficult.”
- "Currently waiting on physio as the physiotherapist has been off sick for two months and no cover, this means my progress with my left arm has stopped."
National Committee of Stroke Support Groups
In June 2011 the Irish Heart Foundation set up the National Committee of Stroke Support Groups. Members of the committee come from support groups across the country. The national committee meets quarterly and gives support to stroke support groups in Ireland. Committee members help to further the cause of their own support group members and everyone living with the effects of stroke.
The Committee has set out the following goals:
- Work together to help new groups form so that everyone who wants to can participate in a stroke support group.
- Help strengthen existing groups by sharing expertise and experience.
- Advocate for better local services; make important information about stroke and the supports for stroke survivors more widely available; and apply pressure for service improvements at a national level.
- Advise the Irish Heart Foundation on Stroke Action campaign.
Members of the National Committee of Stroke Support Groups tell the Minister how they would like things done...
Stroke Lobby Day
Despite being Ireland’s third biggest killer disease, stroke has never occupied a prominent position on the policy agenda. Through hearing stroke survivors’ voices, public representatives can gain a better understanding of their needs when making the decisions that affect their lives and their chances of recovery.
What happened on the day?
70 stroke survivors travelled to Dáil Eireann from every corner of the country to talk about their issues with their local representatives. Some 50 TDs and Senators attended, including the Minister for Disability and Older People Kathleen Lynch. The Minister spoke to the group and is very keen to implement the new neuro-rehabilitation policy (which includes stroke).
This was our first lobby day so we really didn't know what to expect! Unfortunately, some were disappointed not to meet their TDs on the day, despite our best efforts to get them there.
The event will certainly brought stroke and particularly stroke rehabilitation up the political agenda, and we received many offers of support and assistance from the public representatives.
Oireachtas Action
A number of parliamentary questions have been put to the Minister for Health about stroke. Here is a sample of some of the stroke advocacy in Leinster House.
May 3rd 2011 – Mary Mitchell O’Connor TD (Dublin South).
16th November, 2011 – Caoimhghin O Caoláin TD (Cavan-Monghan).
17th November, 2011 – Anthony Lawlor TD (Kildare North) & Bernard Durkan TD (Kildare North).
29th November, 2011 – Michael McNamara TD (Clare)
On the 11th of January 2012, stroke rehabilitation was debated in the Seanad after it was raised by Senator Jillian Van Turnhout.
Then in February stroke services were debated in the Dáil for the first for over 3 hours! Read the full debate here. A first for this Dáil session was that all parties on both sides of the house voted to support the motion – Recognise the findings of the Irish Heart Foundation’s report entitled the ‘Cost of Stroke in Ireland: Estimating the annual economic cost of stroke and TIA in Ireland’.
Neuro-Rehabilitation Policy
As the Stroke Action campaign focuses its attention on rehabilitation services, the authorities are also beginning to take action.
In December 2011, the Department of Health published the National Policy and Strategy for the Provision of Neuro-rehabilitation Services in Ireland 2011 – 2015.
This policy sets out a vision for rehabilitation services for people with neurological conditions, including stroke survivors. Implementation of this policy is essential to overcome the decades of underinvestment and underdevelopment of rehabilitation services.
Meanwhile, the Health Service Executive has established a clinical programme for rehabilitation medicine, headed up by Dr Aine Carroll, Consultant in Rehabilitation Medicine in the National Rehabilitation Hospital.
The Irish Heart Foundation will be supporting the roll-out of the policy and the rehabilitation programme and will continue to highlight the needs of stroke survivors and exert pressure on Government to prioritise this area.
