Postcode care lottery for people living with Huntington's Disease

A DECADE after the urgent need for five Huntington’s Disease co-ordinators in Northern Ireland was identified in a report – at least 48 patients with the rare brain condition have no access to the specialist support because of where they live.

In Northern Ireland 118 people are known to have the incurable hereditary disease. However, the postcode lottery means just people living within two of the five health trusts, effectively covering the greater Belfast area, can be seen by Northern Ireland’s only specialist Huntington’s Disease (HD) nurse.

Sorcha McGuinness from the Huntington's Disease Association Northern Ireland explained that in the advanced stages of the condition, people usually require 24-hour care. "They won't be able to move or to speak. Some people won't be able to swallow so they'll be reliant on tube feeding. It's a very devastating disease."

The HD nurse plays a key part acting as a link to services including mental health, neurology, GPs, social services, occupational therapy and speech and language and also provides medical training to professionals involved in caring for people affected by HD. The HD nurse also reviews the complex mix of medication a patient may have to take and advises GPs and pharmacists.

South Eastern HD patients are referred to the Belfast Trust’s specialist nurse and that cost is covered by the Health and Social Care Board. But HD patients living in the Western, Northern and Southern health trust areas have no access to a HD specialist nurse.

One of those patients is Simon Clark, 45, from Derry/Londonderry. He explained: “At times like now when I am really struggling with HD....I would like to go to someone but there’s no one there.I think it’s disgusting to be honest. It’s wrong – why should we be penalised? We are basically begging for help and we are just not getting it.”

The findings come as the Huntington’s Disease Association Northern Ireland (HDANI) holds its annual conference today (Friday October 6) in Belfast’s Duncairn Arts Centre.

Sorcha McGuinness, chief executive of HDANI, said families were being “put at risk” because of the inequality in care. “It’s completely unacceptable that some patients haven’t got access to treatment simply because of where they live. In this day-and-age everybody should have equal access to services.” She added: “Even in the Belfast and South Eastern Trust where services exist, there’s a lot more could be done.”



Detail Data can also reveal that:

  • A HD care advisor post has been vacant for around 16 months.
  • Six months after the Department of Health Permanent Secretary contacted the Belfast Trust and the Health and Social Care Board to ask them to renew their efforts in recruiting a social worker for the above post – it remains unfilled.
  • The Northern, Western and Southern Trusts have no plans to recruit a HD specialist nurse in 2017/18.
  • Staff shortages in the Belfast Trust area have resulted in more than eight months delay for genetic counselling - patients at risk of HD have to undergo counselling before they can be tested for the disease.

To read the stories of people in Northern Ireland living with the disease, click here.

To view the data that supports this story click here

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