caring Communication
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Improving the health and wellbeing of the nation through illness prevention and health<br />
promotion is key in having a sustainable health service. This requires us to work with other<br />
partners outside the health services, and to be able to listen to people’s needs to find out<br />
what services can best help them live to their potential.<br />
One in 17 people<br />
will develop a<br />
rare disease in<br />
their life.<br />
Keeping<br />
People<br />
healthy &<br />
well<br />
We have a responsibility to you to make<br />
the best use of our resources. Introducing<br />
efficiencies and innovations to improve the<br />
service we provide, whilst also supporting,<br />
developing and trusting our staff can help<br />
us direct resources to where they can have<br />
the most impact.<br />
providing safe,<br />
quality care<br />
when and where<br />
it’s needed<br />
using our<br />
resources<br />
in the best<br />
possible<br />
way<br />
Directing resources and funding towards<br />
identifying and meeting users’ needs,<br />
can help reduce the impact of increasing<br />
chronic diseases, can support older people<br />
to live longer at home, and can increase<br />
the number of people treated in the<br />
community, rather than in hospitals. This<br />
means ensuring that services are integrated<br />
and seamless across different parts of the<br />
health system.<br />
What will be changing?<br />
There are a number of programmes in place that will see the establishment of Community<br />
Healthcare Organisations (CHOs) responsible for delivering community-based care through<br />
local networks, the establishment of Hospital Groups (HGs), and the development of the National<br />
Ambulance Service. Clinical Programmes and Integrated Care Programmes are being<br />
developed to enable both Hospital Groups and Community Health Organisations to deliver<br />
better, more integrated care.<br />
The changes to how national functions are organised are being developed in parallel with the<br />
development of service delivery organisations as part of the National Centre Programme. All<br />
of these are being supported and enabled by interconnected development programmes within<br />
HR, eHEalth, <strong>Communication</strong>s, Health Business Services, and Quality & Safety.<br />
The Reform Programme is based on the objectives of the HSE Corporate Plan and informed<br />
and guided by the underpinning strategies, frameworks and reports, developed by DoH, HIQA<br />
and HSE. A snapshot of these is outlined below.<br />
If you would like to find out more about the Reform Programme, or have any feedback to<br />
offer, please contact the SRG via systemreform@hse.ie<br />
The HSE established the new National Rare<br />
Disease Office (NRDO), which was officially<br />
opened by the Minister for Health Leo Varadkar,<br />
in June 2015. It is based at the Mater<br />
Hospital, Eccles Street, Dublin.<br />
The role of the office is to provide current<br />
and reliable information about all rare<br />
diseases to people with rare diseases and<br />
their families as well as health care providers<br />
and researchers. The office is staffed by two<br />
information scientists who are supported by<br />
two consultants in both Genetic and Metabolic<br />
diseases.<br />
A rare disease (RD) is defined in Europe as<br />
a chronic or debilitating disease that affects<br />
less than five in 10,000 individuals. There are<br />
at least 6,000 rare disorders currently identified.<br />
Collectively, rare diseases directly affect<br />
an estimated 6pc of the population with at<br />
least 300,000 people affected in Ireland over<br />
their lifetime.<br />
The NRDO office provides Rare Disease<br />
information that includes:<br />
• Specific Disease information and Clinical<br />
Expertise<br />
• Social Care Supports<br />
• Patient Support Groups<br />
• Rare Disease Research and Clinical Trials<br />
in Ireland and across Europe<br />
• Rare Disease Policy information<br />
• Non-directive information on the<br />
availability of Rare Disease Specialists<br />
To make reliable rare disease information<br />
available within an Irish context, the office<br />
focuses on collecting information regarding<br />
services and projects that exist in Ireland,<br />
through Orphanet Ireland. Orphanet is an<br />
international information portal that hosts<br />
information on approximately 6,000 rare<br />
diseases through www.orpha.net. Information<br />
collected by Orphanet includes rare<br />
disease summaries, clinical expert centres,<br />
medical laboratories, patient organisations,<br />
research projects, registries, clinical<br />
trials and biobanks; as well as reporting<br />
on rare disease prevalence and orphan<br />
drugs. The office is keen to increase the<br />
number of Clinical Expert Centres in Ireland<br />
on Orphanet Ireland as a first step towards<br />
Irish participation in European Reference<br />
Networks (ERN’s).<br />
Services are available through its Freephone<br />
Information line, website and email.<br />
Please see www.rarediseases.ie If you require<br />
information or contact NRDO at rare.diseases@mater.ie<br />
or through the Rare Disease<br />
Freephone number 1800 240365 /01 8545065<br />
Mon-Thurs 9.30am to 1.30pm.<br />
spring 2016 | health matters | 37
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