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News

Patient Advocacy Service

November 25th, 2020

The Patient Advocacy Service (PAS) provides free, independent and confidential information and advocacy support to people in Ireland who wish to make a formal complaint about their care in a Health Service Executive (HSE) funded public acute hospital, and in the aftermath of Patient Safety Incidents.

People looking for support can contact the PAS confidential helpline to speak to a trained advocate who will help them to get information on the HSE’s complaints investigation process, called ‘Your Service, Your Say’. The Service’s professionally trained independent advocates will support and empower the person making the complaint, with the aim of highlighting their views and concerns.
The Patient Advocacy Service was commissioned by the National Patient Safety Office in the Department of Health and is managed by the National Advocacy Service for People with Disabilities.
You can contact the Patient Advocacy Service helpline on 0818 293003. The helpline is open Monday to Friday from 10am until 4pm, including lunchtimes. You can also email info@patientadvocacyservice.ie

More info about the Patient Advocacy Service is available at https://www.patientadvocacyservice.ie/.

#HoldFirm Campaign

November 23rd, 2020

HoldFirm Campaign

HoldFirm is part of the ongoing COVID-19 public health advice programme from the HSE and the Department of Health.

The HoldFirm campaign first aired in May 2020, as the end of the first phase of restrictions came into sight. Our President’s words, from the poem ‘Take Care’ written in 1993, is the inspiration for the campaign to acknowledge and encourage the enormous effort being made by everyone in Ireland to stay safe and protect each other.

https://www.youtube.com/watch?v=NUi666t74RU

Keeping Well This Winter

November 23rd, 2020

Our Health Service this Winter

Look out for your Keeping well this Winter booklet in the post. It is being delivered to every household in Ireland over the coming weeks.

This booklet contains essential health information and advice to help you plan for the winter months ahead, as we live with the impact of COVID-19 (coronavirus) on our lives.

You can download the English version – Keeping well this winter – here.
You can download the Irish version – Ag fanacht slán an geimhreadh seo– here.

Accessible and translated versions are being developed.

You can listen to the new radio ad here.

Healthy Ireland Keep Well Campaign

You can also visit gov.ie/healthyireland for information and resources on the Government’s new ‘Keep Well’ campaign.

Muscular Dystrophy Ireland Survey on Adult Camp and Holiday Programme

November 20th, 2020

We would appreciate it if you would take a few minutes to complete our survey on MDI’s Adult Camp and Holiday Programme (accessible and supported breaks in Ireland organised by MDI for Adult Members with Muscular Dystrophy).
We will use the information you give us to help us plan and develop programmes in these areas that best meet the needs expressed by members as a whole.
This survey is for over 18’s only. If you have never participated in MDI’s Adult Camp and Holiday Programme, we’d still really welcome your views.
Thank you in advance for taking part.

Changing Places Ireland

November 18th, 2020

Changing Places Ireland have created a petition to Make Changing Places Toilet Facilities mandatory in Public Buildings.  Please take a moment to add your name and share the petition via email and social media.

Changing Places Toilet Facilities are different from standard accessible toilets. They provide extra equipment like a hoist and an adult sized changing bench. In Ireland there are only 15 Changing Places Toilet Facilities compared to over 40 in Northern Ireland.

Changing Places Ireland campaign Steering Group includes people with disabilities, family members and national organisations – including Disability Federation of Ireland, Central Remedial Clinic, Enable Ireland, Inclusion Ireland, Spida Bifida Hyrocephalus Ireland and InterAcT.

#WeAllGottaGo

Disability Legal Information Clinic – now online!

November 12th, 2020

The Disability Legal Information Clinic, run by the Centre for Disability Law and Policy in NUI Galway, will be completely online for the 2020/2021 academic year. The clinic provides free, accessible, confidential legal information on disability related legal issues and will now be available right across Ireland for disabled people, their families and supporters. The clinic is staffed by law student volunteers who are supervised by a member of the CDLP team and a qualified legal practitioner. In the past the clinic has dealt with issues in relation to housing, education, employment, discrimination and access to supports or services.

To find out more about the clinics work visit www.nuigalway.ie/centre-disability-law-policy/dlic/

Apply now for Duchenne Patient Academy 2020

November 11th, 2020

Apply now for Duchenne Patient Academy 2020
The Duchenne Patient Academy (World Duchenne Organization) will host a virtual training programme for patient advocates between 30 November and 6 December 2020. The majority of patient groups are members of the World Duchenne Organization and the Duchenne Patient Academy. Please note that individual patient advocates can also apply to join the academy. The deadline for registration for patient advocates is the 13 November. You can find out more by clicking on this link https://www.duchennedatafoundation.org/apply-now-for-duchenne-patient-academy-2020/

Survey on the Cost of Disability

October 28th, 2020

Cost of Disability Survey

Have your voice heard by taking part in a survey on the Cost of Disability

Last week a survey on the Cost of Disability was posted to a random sample of over 33,000 customers in receipt of relevant disability payments, as well as a survey specifically designed for the over 1,000 customers in receipt of Blind Pension. You can complete the survey online if you didn’t receive a postal copy or prefer to fill it in online.

As you may know, Indecon International Consultants has been working on a report on the Cost of Disability which was commissioned by the Department of Employment Affairs and Social Protection (DEASP). Disability Federation of Ireland has been highlighting the extra cost of disability for years and calling for a package of supports. The survey is thus a crucial opportunity to provide evidence to support these calls and for people with disabilities to document the many extra costs they live with on a daily basis to inform future supports and policy. So, it’s really important that as many people as possible complete it. We encourage you to take part in the survey!

All responses are completely anonymous. The deadline to complete the survey is Monday 16 November 2020. If you have any questions on this you can call the DEASP survey helpline on 01 704 3029 or email CODSurvey@welfare.ie. Alternatively, Indecon can be contacted directly at boconnell@indecon.ie or rotoole@indecon.ie.

Flu Vaccine for Children aged 2-12 years

October 27th, 2020

Flu Vaccine for Children aged 2-12 years

This autumn, children aged 2-12 years are offered the flu vaccine free of charge. The vaccine is administered by the GP or pharmacist using a nasal spray. Children carry the flu virus in their system longer than adults do and they can spread the flu easily to others. If enough children are vaccinated against flu, fewer children and adults will need to see their doctor or n​eed treatment in hospital because of flu. This is very important for our health services especially during the COVID-19 pandemic. You can find more information on the flu vaccine for children here and you can watch the new TV ad here.

Muscular Dystrophy Society of Ireland Ltd.
75 Lucan Road, Chapelizod, Dublin D20 DR77
Tel: (01) 6236414
Fax: (01) 6208663
Email: info@mdi.ie

Registered Charity Number: 20012038
CHY Charity Number: 6849
Company Number: 60460
Country of registration: Ireland

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Cavan, Monaghan, Louth Head Office - Dublin, Kildare, Wicklow Cork and Kerry Carlow, Kilkenny, Waterford, Wexford and Tipperary South Clare, Limerick and Tipperary North Laois, Longford, Offaly & Westmeath Galway, Mayo & Roscommon Donegal, Sligo, Leitrim

1. Muscular Dystrophies

  • Becker muscular dystrophy
  • Duchenne muscular dystrophy
  • Manifesting carrier of Duchenne
  • Congenital muscular dystrophy - General
  • • MDC1A (merosin-deficient congenital muscular dystrophy)
  • • Rigid spine syndrome (RSS)
  • • Ullrich congenital muscular dystrophies
  • • Bethlem myopathy
  • Emery-Dreifuss muscular dystrophy

2. Myotonic Disorders

  • Congenital Myotonic Dystrophy
  • Myotonia
  • Myotonic Dystrophy

3. Congenital Myopathies

  • Central Core Myopathy
  • Minicore (Multicore) myopathy
  • Myotubular or Centronuclear myopathy
  • Nemaline myopathy

4. Mitochondrial Myopathies

  • Mitochondrial Myopathies

5. Metabolic Disorders

  • Metabolic disorders (general)
  • McArdle’s Disease
  • Pompe’s Disease

6. Periodic Paralyses

  • Periodic Paralyses

7. Autoimmune Myositides

  • Polymyositis, Dermatomyositis and Sarcoid myopathy
  • Juvenile dermatomyositis
  • Inclusion body myositis

8. Spinal Muscular Atrophies

  • Severe (Type I)
  • Intermediate (Type II)
  • Mild (Type III)
  • Adult spinal muscular atrophy

9. Hereditary Motor and Sensory Neuropathies

  • (Also known as Charcot-Marie-Tooth or Peroneal muscular atrophy)

10. Disorders of the Neuromuscular Junction

  • Congenital myasthenic syndromes
  • Myasthenia Gravis

11. Friedreich’s Ataxia

  • Facioscapulohumeral muscular dystrophy
  • Limb-girdle types of muscular dystrophy (LGMD) - General
  • • LGMD 1B (also known as Laminopathy)
  • • LGMD 1C (also known as Caveolinopathy)
  • • LGMD 2A (also known as Calpainopathy)
  • • LGMD 2B (also known as Dysferlinopathy)
  • • LGMD 2I
  • Ocular myopathies including ocularopharangeal muscular dystrophy

12. Other (Please Specify)

13. Unspecified