Parkinson’s Patient Conference

October 08 2017

A Cháirde,

I am deeply honoured to be speaking here today at the Parkinson’s Patient Conference in Cavan. I want to take this opportunity to thank the organisers of the local Cavan Branch for inviting me here to talk on such an important matter and to welcome the CEO Paul Gilmore her to Cavan today.

This conference presents a wonderful opportunity for people with Parkinson’s, Carers and healthcare professionals to listen to experts in the treatment, care and coping with Parkinson’s.

I am quite certain the diagnosis of a serious movement disorder can seem like the longest day in the world. It presents those affected with numerous emotions and challenges and a combination of solutions are required including care, support and information.

The management of common chronic diseases, such as Parkinson’s, is now one of the most significant challenges that every health care system faces.

It requires us to find innovative ways of providing healthcare services in partnership with patients and their families.

This is the critical ingredient: empowering patients and their families to be active participants and partners in the management of their condition so that they can bettercope with these experiences.

Parkinson’s disease is a progressive, neurological disorder. So far, it cannot be cured. According to the Parkinson’s Association of Ireland, approximately 12,000 people carry the disease here in Ireland.

Last year, Consultant Neurologist Richard Walsh in Tallaght Hospital, published a landmark Irish study on Parkinson’s Disease in partnership with the Parkinson’s Association of Ireland and Move4Parkinsons. The study shows that the number of people carrying the disease in Ireland is predicted to double over the next twenty years, yet treatment in Ireland is shamefully well below international standards. This can have a detrimental effect on symptoms.

Older people are some of the most vulnerable people in our society. We have a large population moving into advancing years and living longer, which will give rise to a surge in Parkinson’s diagnoses over the next 20 to 30 years, putting a huge strain on resources in and out of hospital. This is something that needs to be planned for. Yet, whilst we talk about it, the issue is put on the back burner while the attention is focused on the emergency department and acute care crisis.

The study, “Treating Parkinsons 2015,” surveyed more than 1,000 Parkinson’s patients and revealed that less than half of patients were seen twice a year by a specialist, which is the international standard. It also showed a high rate of hospitalisation of Parkinson’s patients over the previous 12 months and found that only 17 per cent met a Parkinson’s nurse specialist while in hospital. This is not good enough.

It is critical that those of us in public life do our utmost to address the deficits in services for those with Parkinson’s.

A significant issue currently facing Parkinson’s is the number of clinical nurse specialists in Ireland. We have 5; however, the recommended number for our size population is 27.

Clinical nurse specialists have a huge role to play in diagnosis and symptom management.

They undoubtedly provide a lifeline for patients following diagnosis, by assisting them with new medications and listening to their fears and anxieties. These nurses can have a hugely positive impact on the lives of people with Parkinson's, helping them to take control of their condition from the start.

A second major issue, which is particularly relevant here in Cavan, is securing an all-Ireland Deep Brain Stimulation service. The Joint Oireachtas Committee on Health reviewed this and recommended a link with Northern Ireland to provide the surgery and Mater to provide aftercare.

Only three percent of Irish Parkinson’s patients have access to Deep Brain Stimulation which is established as a standard treatment for patients with medication frequency issues.

It is a surgical treatment involving the implantation of a medical device into the brain, which sends electrical impulses to specific parts.

It has been shown to have remarkable results for medication- resistant movement disorders such as Parkinson’s.

A lot of Irish patients are very good candidates for this treatment, yet are not getting access because they have to travel to England. Getting to Dublin is difficult enough for many, nevermind having to leave the country.

A third, very serious issue, is the lack of access to neurorehabilitation in Ireland. As it is most common for people to develop Parkinson’s in later years, they do not get access to what little neurorehabilitation services there are.

Therefore, the implementation of the neurorehabilitation strategy is critical to people with Parkinson’s. This is a strategy that was published in 2011, yet there is still no implementation plan in place.

There is a commitment in the Programme for Government to publish an implementation plan but investment will be crucial here.

Ireland has less than half the number of rehabilitation beds that we need for our population. We only have three community neuro-rehab teams when we need at least one in each community health organisations, and we have the lowest number of consultants in rehabilitation medicine in Europe. This is completely unacceptable.

The National Clinical Programme for Neurology Model of Care document recommends an increase in the number of consultant neurologists, nurse specialists, including clinical nurse specialists in Parkinson's disease, and other Health Care professionals which would address waiting time issues. The programme also proposed implementation of these recommendations over a period of 5 years. This will significantly improve the access for all Neurology patients including people with Parkinson's disease.

The model of care for neurology was launched by the Director General of the HSE on the 27th September 2016 and the HSE is now working towards its implementation. I am committed to doing all in my power to ensure this happens, sooner rather than later.

Before I finish, I would like to take this opportunity to pay tribute to the Parkinson’s Association of Ireland and the Parkinson’s Disease Society of Northern Ireland and most especially our local Cavan Branch of Parkinson’s Association and in particular your chairman Paddy Conaty and Secretary Eileen Burke Smyth for the tremendous work they carry out on behalf of people who suffer from Parkinson’s Disease and their families. It is important to acknowledge this work as many people who suffer from Parkinson’s Disease would not lead a life as independent as they are living without their help.

Thank you.

Niamh Smyth TD.

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