Patients Deserve Better
Patients Deserve Better: Community Neurorehabilitation
HDAI has been part of the nationwide campaign Patients Deserve Better which throughout this year is calling for a community neuro-rehabilitation team to be established in each of the 9 HSE CHO areas around the country.
Community neuro-rehabilitation teams provide access to vital therapies including physiotherapy, speech and language therapy, neuropsychology etc for people with a wide range of neurological conditions living in the community.
These 9 teams were promised in the National Neuro-rehabilitation Strategy, in an implementation plan published in 2019, but so far only 2 teams are up and running nationwide and even these have long waiting lists and are not fully staffed to meet the local need.
The Neurological Alliance of Ireland, a national umbrella group for over 30 neurological charities leads the campaign.
HDAI family members Mary and Derek joined the panel of speakers for the Cork/ Kerry and Galway/Roscommon/Mayo launches respectively. Recordings of the launches are online: Cork/Kerry Galway/Roscommon/Mayo
The campaign is already delivering tangible success in individual CHO areas including:
-Securing funding for teams in CHO s 2 and 4 as announced by Minister for Disability Anne Rabbittee on May 10th this year
-Securing funding in 2023 to enable full teams to be recruited in CHOs 6 and 7
NAI is calling on people around the country to take action to support the Patients Deserve Better campaign by visiting www.patientsdeservebetter.ie where you can contact your local politicians directly.
Patients Deserve Better: Specialist Nurses for Neurology
The Neurological Alliance of Ireland launched their #PatientsDeserveBetter campaign to call for more specialist nurses across neurology services on 4th October 2021
HDAI, together with other groups, has been working with the Neurological Alliance of Ireland as part of their "Patients Deserve Better" campaign to call for action to tackle the shortage of one hundred specialist nurses in neurology services.
The campaign is calling for 20 additional nurses each year over the next five years to tackle this shortfall.
A very successful pre budget campaign led to 23 additional nurses being announced in this years Budget. Minister Rabbitte has announced that these additional nurses will cover neurological conditions including Huntington’s disease, multiple sclerosis, Parkinson's disease, epilepsy and rare neurological conditions and will be assigned by the National Clinical Programme in Neurology all across Ireland in response to local needs.
Mags Rogers, Executive Director of the Neurological Alliance of Ireland has highlighted the key role of collective patient advocacy in this campaign "Over 11,000 e mails have been sent to TD's via the campaign website patientsdeservebetter.ie since the NAI lead campaign was launched in October 2021. This is an example of how organisations representing people with neurological conditions can work together with these individuals and their families to achieve real change".
Nurse specialists play a crucial role in supporting people with neurological conditions. Increasing the number of neurology nurses will ensure that people with neurological conditions have improved access to healthcare supports and reduce the time they are waiting for appointments.
HDAI participated in the campaign to highlight the need for Huntington’s Disease specialist nurses. To date there are no HD specialist nurses in neurology services in Ireland.
The campaign brought a focus to regional neurology services. You can learn how to support the campaign and see more information at: https://www.patientsdeservebetter.ie