Parkinson S Disease and Deep Brain Stimulation (DBS) Treatment in Ireland

Parkinson’s disease and Deep Brain Stimulation (DBS) Treatment in Ireland

Joint Oireachtas Committee Presentation

6th November 2014

The Parkinson’s Association of Ireland

Established in 1987 The Parkinson’s Association of Ireland (PAI) is the National Patient Support organisation for people with Parkinson’s, their family, carers and others. PAI s made up of a national Office, based in Dublin and 16 branches spread throughout the country.

At a national level PAI provides a helpline service 5 days a week as well as a nurse specialist call back service. We also provide a wide range of information leaflets (28 in total), magazines, booklets all available free of charge. Regular information sessions are provided across the country. We also act as an advocate for those with Parkinson’s and continually seek opportunities to strengthen the voice of this section of the population whether through national media or local issues. The HIQA report produced in 2012 included PAI as one of the collaborators.

At a branch level our volunteers all provide a vast range of services which enhances the day to day life of those living with Parkinson’s whether directly impacted or as carers. Such services cover activities such as social gatherings, exercise classes, physiotherapy, voice training dance etc.

The PAI is also at the forefront in providing financial support to the Nurse Specialist population in Ireland. Of the 5 PD Nurses in situ in our Neurological units the PAI directly and indirectly funds 2 of these as well as providing a part time PD Nurse Specialist telephone helpline and call back service. Until recently PAI had also partly funded a sixth Nurse in Cork but unfortunately this post has become vacant. Our helpline receives around 3,000 calls per annum and our average monthly website hit is circa 3,500 – 4,000

As we receive no state funding the majority of our activities are funded through donations from the general public as well as some small grants from Pharmaceuticals.

Facts and Figures:

Parkinson’s disease (PD), first documented by Dr. James Parkinson in 1817, is the second common chronic neurodegenerative disease (Simuni and Sethi, 2008) after Alzheimer’s, and it is progressive and disabling in its development.

It is estimated that Parkinson’s disease affects 1-2:1,000 of the general population, affecting more men than women. This can be further broken down to 2:100 of the elderly. Based on these figures we can assume:

- 9,000 people in Ireland, - 1.2 million people in Europe, - 6.3 million Worldwide (EPDA, 2011).

Incidence increases with age. It affects about 0.4% of people over 40 years, about 1% of people over 60 years, about 2-3% of those older than 65 and 3-4% of those older than 85. Due to our increasing life expectancy, the prevalence of PD is expected to double in the next 20 years1.

Not all are diagnosed.

"The economic impact of Parkinson's is enormous – the annual European cost is estimated at €13.9 billion (Gustavsson et al 2011). Yet Parkinson’s is just one of many neurodegenerative disorders, which will surpass cancer as the most common group of medical conditions by 2040 (WHO 2004)" - The European Parkinson’s Disease Standards of Care Consensus Statement, 2012.

1 Dorsey, Constantinescu, Thompson, et al. Neurology 2007 In the HSE Performance report published June 2012, neurology is one of six specialities accounting for high numbers of patients waiting longer than 12 months for an Out Patient Department (OPD) appointment. The Neurological Alliance of Ireland (NAI) found in a survey conducted in 2011 that 150,000 people in Ireland required these services, including Speech and Language Therapy, Occupational Therapy and Physio, and 5 out of 6 of these people could not access it. The National Institute of Clinical Excellence (NICE) guidelines (2006) support the referral to these services to promote independence, to allow people with neurological conditions to continue to work and contribute to society.

Deep Brain Stimulation (DBS)

DBS is used for the treatment of the Motor symptoms of Parkinson's, such as tremor, rigidity, stiffness and walking problems. The procedure is used only for patients whose symptoms cannot be adequately controlled with medications.

DBS is a brain (neurological) treatment in which mild electrical signals stimulate certain areas of your brain. The signals reorganise your brain's electrical impulses, causing improved symptoms in many conditions affecting your brain. You may have deep brain stimulation on one or both sides of your brain, depending on your condition.

Benefits of DBS

In Ireland we as a Patient support organisation are frustrated that Ireland is the only European country that does not carry out this procedure. We have seen first-hand the benefits of this treatment and constantly listen to testimonials of those who have received the treatment. One person’s daughter who saw her mum after receiving the treatment said “mammy you’re as good as new”. What better way to describe the impacts that this surgery can have on a person and their family. People who before the procedure had very bad tremor or great difficulty in moving are now able to move with a significantly higher level of fluidity. Quality of life has been restored and the individual has been able to lead a more normal life. As part of our presentation today we have a patient who has received this treatment to talk first-hand about the benefits of receiving DBS. Another example of the benefits of DBS in getting back to some semblance of normality is a case where we had a volunteer member who having received DBS was working with us at the national office. This would not have been possible if the surgery had not been carried out.

Let us be clear, DBS is not suitable for everyone. However, for those for whom it is suitable not everyone can access this service due to personal constraints. The HIQA report carried published in 2012 and referenced in detail later, states that whereas today we have approximately 13 people per annum receiving DBS overseas, this number could rise to 19 if we carried out the service in Ireland. That is 6 people a year more who would have a better quality of life.

Across our network of branches we have people waiting on treatment and in many cases due to the costs of travel and bringing a partner along our branches would where possible would provide additional support. If we had an all Ireland approach this would be one burden lifted.

I will leave the medical explanations of DBS to the professionals, however suffice to say that DBS uses a surgically implanted, battery-operated medical device called a neurostimulator, similar to a heart pacemaker to deliver electrical stimulation to targeted areas in the brain that control movement, blocking the abnormal nerve signals that cause tremor and PD symptoms.

Once the system is in place, electrical impulses are sent from the neurostimulator up along the extension wire and the lead and into the brain. These impulses interfere with and block the electrical signals that cause PD symptoms.

Obtaining DBS treatment

In November 2012 HIQA published a paper on the results of Health Technology Assessment of a national deep brain stimulation programme for adults with movement disorders.

In this report Dr Mairin Ryan, director of Health Technology Assessment in HIQA stated that “since 1997 over 130 Irish patients have received DBS treatment abroad, funded through the E112 Treatment Abroad Scheme. This HTA shows that, for equal numbers of patients treated, the current system where patients are routinely referred to the UK for treatment costs less than a proposed service provided nationally. However, an adequately resourced Irish service would have benefits, both for the overall numbers of patients who can avail of the treatment, as well as for individual patients receiving long-term DBS care”.

The report goes on to describe DBS as a surgical approach to treating the symptoms of advanced Parkinson’s disease, dystonia and essential tremor that cannot be adequately controlled using medication alone. As there is currently no DBS programme within the Irish healthcare system, patients are routinely referred to centres in the UK for treatment, with funding provided under the E112 Treatment Abroad Scheme (TAS).

The report also highlights that the benefits of a national DBS service would include improving access to treatment for eligible patients who may not be able to travel to the UK.

The value of having a local service whether in Ireland North or South would ease somewhat the logistical challenges in terms of accessing emergency support in case of adverse effects or complications. This is assuming that the need to obtain TAS approval and arrange overseas travel at short notice would be removed in the setting up of an all-Ireland service based in the North.

The HIQA report goes on to state that “A national DBS service would treat approximately 19 new patients with movement disorders each year. This is more than the current average of 13 new patients per annum undergoing surgery via the TAS, indicating a potential underuse of DBS services. The could be caused by a number of factors including difficulties for patients in travelling abroad, constraints in receiving an appointment with a consultant neurologist or a decreased level of referrals from a neurology service lacking in experience in assessing and referring patients for DBS treatment.”

There are also logistical issues and difficulties for patients experiencing adverse effects or complications subsequent to their surgery that necessitate a return journey to the DBS centre in the UK Conclusion

As the HIQA report sets out clearly A national DBS service will cost the HSE more per patient treated (€20,900 more over 10 years) and result in an increase in the overall costs of the service (€1.84 million more over five years) compared to the estimated €4.29 million to treat the same number of patients abroad via the TAS. A key factor in this analysis is the impact of private health insurance. Under current arrangements, a greater proportion of costs can be recouped from private health insurance companies for insured patients if DBS is provided abroad rather than in Ireland. In a scenario analogous to a single payer system, where the entire cost of DBS care for an 18 individual patient is entirely borne by one provider, the difference in cost between the two service delivery options is greatly reduced. It is likely that a national DBS service would also result in an increase in the number of patients with movement disorders undergoing DBS, from approximately 13 to 19 new cases a year. However, the initial growth of a new national DBS service is likely to be constrained by the need to build local capacity and expertise. Potential benefits to patients from having a national DBS service include the elimination of the logistical and financial demands associated with overseas travel, improved continuity of care and reduced administrative burden. Challenges that exist in relation to the establishment of a national DBS service include building the clinical expertise and service capacity to meet current and future demand while ensuring that adequate access to high quality DBS services is maintained and existing services for other neurosurgical patients are not undermined

In closing, The Parkinson’s Association of Ireland would welcome any initiative that brings DBS treatment to more people in Ireland who can benefit from this. We have seen first- hand the quality of life that BDS can hand back to a person and their family.

Whilst we understand there are cost implications this is about more than cost. This is about quality of life for people living with debilitating diseases such as Parkinson’s. As has been set out earlier by having this type of service in Ireland we could potentially increase the number of patients receiving treatment by circa 50%. As the numbers of people with Parkinson’s increases more and more will need this life changing surgery. Would it not therefore be better to have access to this on the island of Ireland?

A centre of excellence for DBS in Ireland will should not only allow increased numbers to be treated enhancing quality of life but will, one would imagine enhance the overall service including postoperative care. It is an opportunity for Ireland to step up to the mark and provide the same service as our European neighbours. We have the medical expertise, some of the best in Europe now we need to provide the infrastructure to deliver this.