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niNCA Manifesto Launch

Nearly two fifths of people with Parkinson's (37%)1 have felt the need to hide their symptoms or lie about having the condition - according to new findings released today by Parkinson's UK.

The research, released by the charity to mark the start of Parkinson's Awareness Week, has revealed an alarming level of fear around sharing a diagnosis of Parkinson's, cutting people off from vital support available at a time when many report struggling emotionally to come to terms with their condition.

Those who did feel the need to hide their symptoms reported not wanting people to feel awkward or embarrassed around them (63%), feeling they would be judged (34%), or not feeling like the symptoms were socially acceptable (32%).

There are 127,000 people with Parkinson's with the UK, and 3,600 people in Northern Ireland, with someone being diagnosed with the condition in the UK every hour.1 The charity estimates that 42,000 people in the UK have delayed sharing their diagnosis with someone close to them. 2

Those who delayed telling family or friends (33%) said it was because of:

Not knowing how to bring it up (36%)

Not wanting to accept their diagnosis (33%)

Being unable to find the words (28%)

Thinking they would be stigmatised (21%) or look weak (19%).

The charity is concerned by the findings, which reveal a worrying level of emotional repercussions for people diagnosed with Parkinson’s. Over a third (37%) of those surveyed experienced negative emotions in the year following their diagnosis, with the news having the hardest emotional impact on younger people with Parkinson’s.  Many people reported feeling ‘like their world had ended’ (18%), ‘like they were grieving’ (14%) or ‘like they didn’t know who to turn to’ (13%).

Patrick Crossan, 52, a business consultant, from Belfast and an All-Ireland athlete, said;

“I was diagnosed with Parkinson’s in November 2013. I had a tremor in my left hand and went to my GP.

Initially it was thought I might have a benign brain tumour but after tests I was diagnosed with Parkinson’s.

I told my wife, sisters and a few close friends as soon as I got the news. Saying I have Parkinson’s for the first time, was upsetting and as much as I put a brave face on it I was crumbling inside.

I didn’t want my wife and family to be upset but I didn’t know how to answer their questions. I have two teenage children and both were doing exams at the time and we decided not to tell them until their exams were over in the January of 2014.

The three months that I kept my diagnosis from them was very stressful and I was very relieved when the time came to tell them,” explained Patrick.

“I got in touch with Parkinson’s UK and a Parkinson’s Local Adviser came out to the house and sat down with us and answered all my family’s questions.

It was very reassuring for me to have someone explain to my wife that although my hand was shaking, it wasn’t painful.”

When asked if he has ever hidden his symptoms Patrick replied: “I was doing a test on one occasion and my hand started shaking and banging on the table, I put my hand under the table as I was embarrassed.

There are other symptoms that aren’t so visible such as paranoia and apathy which I may hide but not from my family.”

Patrick still competes competitively in athletics and recently won two gold medals at the National Masters Indoor Athletic Championships in Athlone.

People who have shared their diagnosis with their immediate family reported feeling ‘able to accept they had Parkinson’s’ (45%), while one in four reported feeling relieved (27%), and 15% say they felt glad they didn’t have to hide their symptoms anymore. 

Nicola Moore, Northern Ireland Country Director at Parkinson’s UK said;

“No-one should feel alone in dealing with a diagnosis of Parkinson’s. Too many people are struggling with their diagnosis alone because of fear of what people might think, say or do. 

It’s worrying that many people with Parkinson’s, for a wide range of reasons, are not able to access the help they need - and it’s having a devastating impact on their emotional health. We are determined that each and every person with Parkinson’s is aware of the support available so they can feel equipped to have these difficult conversations.

We know that the right support, whether through family, friends or Parkinson’s UK, is vital for those with the condition, to help them come to terms with their diagnosis and know that they’re not alone. We are here to help people find the support they need, when they need it.”

ENDS

Media enquiries

Please contact:
Campaigns, Policy and Communications officer for Northern Ireland, Caroline McEvoy, on 0344 225 9868 or email cmcevoy@parkinsons.org.uk
  
Out of hours: 077380 91899

Notes to editors

Case studies of people with Parkinson’s are available to speak to media.

Based on a prevalence of 127, 000 people living with Parkinson’s in the UK, this equates to 46, 990 people

Parkinson’s UK (2009) Parkinson’s prevalence in the United Kingdom

Estimated from a figure of 33% of those surveyed and based on a prevalence of 127, 000 people living with Parkinson’s in the UK.

About Parkinson’s UK

Every hour, someone in the UK is told they have Parkinson's.

It affects 127,000 people in the UK - which is around one in 500 of the population.

Parkinson’s affects approximately 3,600 people in Northern Ireland.

Parkinson's is a degenerative neurological condition, for which there currently is no cure. The main symptoms of the condition are tremor, slowness of movement and rigidity.

Parkinson's UK is the UK's leading charity supporting those with the condition. Its mission is to find a cure and improve life for everyone affected by Parkinson's through cutting edge research, information, support and campaigning.

For advice, information and support, visit www.parkinsons.org.uk or call our free, confidential helpline on 0808 800 0303.

Methodology Note

ComRes  interviewed  1868  people  with  Parkinson’s  between  14th  January  and  11th  February  2016 using both online and paper surveys.  ComRes  is  a  member  of  the British Polling Council and abides by its rules. Full data tables are available at www.comres.co.uk.

Charities align to support people living with neurological conditions across Northern Ireland

The Northern Ireland Neurological Charities Alliance (niNCA) launched their manifesto at the Long Gallery, Parliament Buildings, Stormont Estate, Belfast on Monday 14 March 2016.

The alliance is composed of 11 member organisations representing various neurological organisations across Northern Ireland collectively representing over 48,000 people living with neurological conditions. The focus of the Alliance is;

• Improving Care – Ensuring people with Neurological conditions have access to accurate and timely diagnosis and appropriate multi-disciplinary treatment, care and support.

• Raising Awareness – Raising and maintaining awareness of the impact and diverse range of needs faced by people living with neurological conditions.

• Working Together – Working together NINCA member groups deliver a cohesive approach to lobbying government and liaising with and social care providers.

The event provided an opportunity for individuals living with a neurological condition, carers and the voluntary sector to meet with key decision makers, commissioners and healthcare professionals, who all play an important role in supporting individuals living with a neurological condition in Northern Ireland.

The manifesto comes at a time when neurology services have come under scrutiny for falling behind other condition areas; patients with long-term neurological problems report both some of the worst states of pain and some of the highest levels of anxiety or depression, with the lowest health outcome scores of any long-term conditions. Despite these issues, neurology has largely been ignored by local commissioners and continues to lag behind other condition groups in service quality, availability and access.

The thousands of people living with neurological conditions must not be treated as an afterthought –the Alliance offers the client group a voice and a platform to raise pertinent issues for those living with neurological conditions.

 

niNCA Manifesto Launch

On the 14th March 2016 we will be launching our Manifesto at the Long Gallery in Stormont to an assembled audience of legislative and healthcare representatives.

Central to our manifesto are our 3 key aims:

Improving Care – ensuring people with Neurological conditions have access to accurate and timely diagnosis and appropriate multi-disciplinary treatment, care and support.

Raising Awareness – raising and maintaining awareness of the impact and diverse range of needs faced by people living with neurological conditions.

Working Together – working together niNCA member groups deliver a cohesive approach to lobbying government and liaising with health and social care providers.

niNCA comprises of eleven member groups which represent Charities and Support Groups for neurological conditions ranging from commonly recognised diseases to rare disorders.

Our focus is to ensure that neurological services are given priority at all levels of health and social care planning and we are committed to achieving this by working together and speaking as one influential voice.