Keith Swanick (Fianna Fail) | Oireachtas source

I thank the Minister for coming to the House today to facilitate this debate. We all know the pressures the health service is under. The Minister is aware of my belief that the problems we see in secondary care will never be rectified until primary care is adequately resourced. To that end, we need to re-invest our efforts in training more young GPs, practice nurses and community health nurses. I know we spoke about the funding of the Institute of Community Health Nursing this morning during a Commencement debate, for which I thank the Minister.

I believe in a solution driven and pragmatic approach. To that end, I urge the Minister to sanction some extra funding for general practice out-of-hours services so that multiple GPs can work during particularly busy periods from mid-December to mid-January to help reduce referrals to accident and emergency departments. It is a simple, practical and solution-driven idea that would alleviate some of the pressures on the secondary care system.

I also ask the Minister to review our district hospital network, particularly district hospitals in rural areas like my own. Senator Conway-Walsh would also be very familiar with the hospital in Belmullet. These hospitals are a good distance from acute hospitals. For example, Belmullet is over 50 miles from one. The community hospital network should not be seen as a relic of a bygone era. I believe community hospitals have a pivotal role to play in a modern health service as they can fulfil multiple roles. For example, they can prevent admissions to acute hospitals because GPs can admit directly to them. They also facilitate discharges from acute hospitals. If somebody has a hip replacement, he or she can be transferred to a community hospital and receive rehabilitation with the help of a community physiotherapist in the community thus freeing up an acute hospital bed. More importantly, district hospitals can play a role that has been underutilised. They can work as an interface between the fair deal scheme and the acute hospital sector. If somebody is an acute hospital patient and applies for the fair deal scheme, they often wait a number of weeks in the acute hospital bed, possibly up to 12 weeks. There is no reason that the patient cannot be transferred to a community hospital for the intervening period before being transferred to the nursing home.That is another role that we should look at.

We also need, as the Minister said, to encourage community based investigations in general practice. My own surgery has an ultrasound scanner, a DEXA scanner for osteoporosis, spirometry for breathing testing and audiometry for hearing, to mention a few, but they are being under-utilised as there is no funding model available for medical card patients. This means that patients are disenfranchised as they have to travel to acute hospitals to have these investigations carried out, when they could be carried out in the community.

I take this opportunity to touch on two further topics. One is alpha-1 antitrypsin deficiency and the other one is narcolepsy. The Minister will be aware that 350 people are diagnosed with alpha-1 antitrypsin deficiency throughout the country. It is the most common genetic lung disorder in Ireland and can lead to severe lung, liver and skin problems. The majority of people with alpha-1 antitrypsin deficiency present with emphysema or chronic obstructive pulmonary disease, COPD. A new groundbreaking drug called Respreeza was shown to slow the progress of emphysema in a recent clinical trial. It was called the rapid study clinical trial, and 21 Irish alpha-1 patients took part. Since the trial ended these patients have been receiving the treatment from CSL Behring on a compassionate use basis. On 26 July last year patients were informed by the company that they would stop providing this treatment on 30 September. On 23 September this was extended until the 31 December 2016. Two further extensions were given, one until the end of January and the next until 28 February. These people are living in limbo, waiting month to month to find out whether they will receive the treatment which is changing the quality of their lives for the better. Unfortunately, on 9 December, the National Council for Pharmacoeconomics, the NCPE, published a decision to recommend against funding Respreeza. Alpha-1 patients are naturally devastated by this decision. They desperately need this issue to be resolved to prevent further distress and anxiety, and I would be grateful if the Minister could consider this.

The Minister will be familiar with the organisation SOUND, the support group for sufferers of unique narcolepsy disorder. It is seeking support to fund a national narcolepsy and related disorders service at St. James's Hospital. It is envisaged that this unit will complement the existing paediatric service for younger people with narcolepsy. It is something which is urgently needed. Its cost, €1.6 million, is a drop in the ocean in the grand scheme of things within the HSE. The reason that this is particularly time sensitive is that the 80 young people who suffer from narcolepsy as a result of the pandemrix vaccine will soon be adults and will no longer be provided treatment under paediatric services.

There are approximately 1,600 patients with narcolepsy in Ireland. SOUND represents the people who developed the disorder as a result of the swine flu pandemrix vaccine. There are currently 80 plus members, and the funding amount of €1.6 million will provide staff, including a neurologist, a neurophysicist, a respiratory consultant, clinical nurse manager, dietitian, laboratory nurse and four lab technicians. The recognition of the association between the pandemrix vaccine and narcolepsy disorder has exposed the lack of proper treatment pathways for patients. A 2012 Government report recognised the link between the vaccine and the disorder, and it was withdrawn from clinics. Sufferers have to live with a range of debilitating symptoms, including hallucinations, cataplexy, increased risk of accidents and obesity, to name just a few. It is an incurable, life-long illness which impacts on all areas of their daily life. This is a unique problem. As a result of a public health programme there are over 80 young people who will never know what a normal life is. There needs to be a commitment from the Government to ring-fence funding so that life-long supports will be put in place for sufferers. There must be a seamless transition from paediatric treatment to the treatment of adult sufferers, and there must be a commitment for a multi-disciplinary centre of excellence.