What would you ask the Minister for Health?

We asked members of our National Committee of Stroke Support Groups to ask the Minister for Health what needs to be done to improve stroke services in Ireland. What would you ask for?  Write to or meet your local TD and ask them to improve the lives of stroke survivors in Ireland. 

 

 

The Irish Heart Foundation wants to emphasise that while acute stroke services are improving rehabilitation services are not being matched and these will help survivors maximise their quality of life.

Rehabilitation services in the community remain virtually non-existent despite the often complex physical and mental impact of stroke. Our recent Cost of Stroke in Ireland report showed that less than €7 million per annum is being spent on community rehabilitation – barely enough to pay for a single physio session for some 50,000 stroke survivors.

Stroke is the largest cause of acquired adult disability so there’s a need for timely access to rehabilitation services which must then continue when the survivor is discharged back into the community.  We cannot have a health system that patches people up and then ignores their basic needs.

Make sure you are clear on which points you would like to raise with your local politician before the meeting. Tell your personal stories to give them a better understanding of how this has affected you.  You don’t have to talk about every point, chose what is important to you, and feel free to add more to do list. 

Rehabilitation Services

Every patient should have access to appropriate levels of short and long term rehabilitation in hospital and in the community.  Each patient should be entitled to receive a minimum of 45 minutes of required rehabilitation 5-7 days a week for as long as it is needed.  This should include physiotherapy, occupational therapy, clinical psychology, speech and language therapy and nutrition and dietetic input provided by both hospital and community based teams. 

  • What is your rehabilitation experience?  Tell your story.

Social Support

Social and vocational supports must be available to help people put their lives back together after stroke.  For example, everyone should have access to a stroke support group.  At the moment, there are roughly 24 stroke support groups in Ireland and there are nearly 50,000 stroke survivors.  These groups are run by dedicated volunteers with little or no financial support; some can only meet once a month.  State assistance is needed to ensure that everyone who has had a stroke has access to a properly-resourced support group.

  • How have you benefited from being part of a stroke support group?  

Vocational Support

Financial assistance such as housing grants can make the difference between living at home and institutionalisation.  Support to return to work, or undergo re-training can determine whether a person can return to the workforce.  These are not just crucial in human terms; they can save the State money.

  • Do you have access to re-training supports?  Did you have to wait for a housing adaptation grant? 

Tackling Age Discrimination

Age-related inequalities are common within stroke services.   Services should always be provided on the basis of individual need. 

  • Do you have experience of this?  Were you too young to get rehabilitation locally?  Or too old to go to the National Rehabilitation Hospital? 

National Rehabilitation Hospital

The National Rehabilitation Hospital has 110 beds available for inpatient admissions to NRH. 47 of these are beds for patients with Acquired Brain Injury, including Stroke. On average, they have a total of 150 patients (all age categories/ diagnoses) on the waiting list for inpatient rehabilitation. The average length of inpatient stay for stroke patients is 91 days.

  • Were you on a waiting list to receive treatment in the NRH?  How did this affect you?

Carer’s

Government need to address the social, emotional, and practical needs of carers in supporting stroke survivors.  There is concern that the Half Rate Carers Allowance of €106 per week, available to fulltime carers in receipt of another social welfare payment will be cut. With latest research finding that fulltime carers provide an average of 110 hours of care each week, those in receipt of this allowance are being paid 96 cent per hour. Cutbacks imposed on the Carers Allowance, Carers Benefit and Half Rate Carers Allowance in Budget 2010, as well as the removal of the Christmas bonus, has meant that carers have seen their incomes fall significantly.

  • Are you a carer?  How have these cutbacks affected you?