Spring 2015 newsletter

REGIONAL SUPPORT GROUP INFORMATION Belfast Support Group

Time: 2pm- 4pm ‘Syndicate 2’, 3rd Floor Grosvenor House, Glengall St, Belfast, BT12 5AD (beside the Europa Bus Centre - handy for train & bus!)

First Thursday in the month

Contacts: Jennifer (028 9058 3300 or 07832 222820) or Errol (028 2177 1812)

Armagh Support Group

Time: 7.30pm Armagh City Hotel, Third Wednesday in the month (except Jan/Feb)

Contacts: Rita (028 3752 6429) or Sylvia (028 3833 8238)

Limavady Support Group

Time: 8pm The Classic Restaurant, Main St. Limavady Last Thursday in the month

Contacts: Paula (028 7776 3419) or Errol (028 2177 1812)

Omagh Support Group

Time: 8pm The Wave Centre, 18 Holmview Ave, Campsie, Omagh Second Monday in the month (except Jan/Feb and July/Aug)

Contacts: Moira (028 8164 8717) or Errol (028 2177 1812)

24 hour “Telephone Support Service” Pat (028 9022 1950) and Errol (028 2177 1812) Please note: If no-one is available to take your call please leave a message and someone WILL get back to you ASAP !

Huntington’s Disease Nurse Specialists Belfast City Hospital Tel: 028 9504 7930

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HUNTINGTON’S DISEASE ASSOCIATION NORTHERN IRELAND Families at the heart of all that we do

Huntington’s Disease Association Northern Ireland Newsletter Newsletter printing is generously sponsored by NIE Staff and Pensioners Charity Fund

Spring 2015

Message from the Chair Dear Members, friends and supporters Once again we are well and truly into the New Year. Spring is upon us and we have new plans and strategies to be put in place for the organisation, its board, family members and supporters. The new financial year is beckoning and we are keeping our heads above water and Sorcha is doing her best regarding fundraising and charitable applications for various projects.

Hopefully later in the year we will see the befriending service available over all of the North and those feeling isolated becoming more involved in HDANI. Also good news regarding another support worker being employed to lighten Errol’s workload and bring some much needed extra help for us. Hopefully by early summer there will be someone in place within the

organisation.

I would like to say goodbye to a few board members who have left due to pressures of work and family and to let them know that HDANI will be there for them if and when needed. Our board is still strong but if you feel you would like to contribute to it feel free to contact Sorcha or myself regarding this.

Finally thanks to all our supporters and those who fundraise tirelessly for HDANI and remember families are at the Heart of all we do.

To donate to the Huntington’s Disease Association please text

HDNI 14 £5 to

70070

Jennifer Warnock

Contact:

Manager: Sorcha McGuinees Tel: 07982 843907 Email: sorcha@hdani.org.uk Member Services and Newsletter: Errol Walsh Tel: 028 2177 1812 Email: errol@hdani.org.uk Telephone support lines: Pat McKay Tel: 028 9022 1950 and Errol Walsh Tel: 028 2177 1812 Youth contact: Cat Martin Tel: 07785 332063 Email: hdyo@hdani.org.uk HD Nurse Specialist Team: Belfast City Hospital Tel: 028 9504 7930

Website: www.hdani.org.uk

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FORTHCOMING EVENTS

Belfast Titanic Half Marathon

on Saturday 4th July 2015 In support of Desmond Clarke and Huntingtons N.I.

HDANI Conference 2015

Dear members, This year’s annual family and carer’s conference will take place in La Mon Hotel and Country Club in Castlereagh on Friday September 18th.

Please make a note of the date in your diary and, if possible, reserve your place now.

Full programme information will be made available in the summer newsletter.

Meantime we have engaged an internationally renowned speaker and there will be advice clinics and workshops, including pampering sessions followed by dinner and dancing.

Tickets £30pp including all meals and overnight accommodation.

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Lislooney - Rocks Charity Cycle

Calling all runners!

Registration is now open for the Titanic Half Marathon (deadline June 30th) Including Children’s Fun Run! www.belfasttitanichalfmarathon.com

HUNTINGTON’S DISEASE ASSOCIATION NORTHERN IRELAND Families at the heart of all that we do

• Leaving Lislooney Church Hall at 8am (sharp) • Cycling to White Rocks, Portrush (approx 70 miles) via Caledon, Eglish, Dungannon, Cookstown, Moneymore, Desertmartin, Tobermore, Maghera, Swatragh, Garvagh, Coleraine, Portrush • REFRESHMENT STOPS 1. Dungannon Lough

(13 miles) 2. Ciclisport MoneyMore

(29 miles) 3. Layby Carhill Interiors

(49 miles) • Arriving at White Rocks car park approx 1-2pm • Bar-be-que followed by a walk along the sea shore to Portrush and back (approx 4 miles) • Transport back to hall can be provided

Contact Alan 07955 211476 or Kim 07849 322984

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In Memoriam Jaqueline Brown (Ballymena)

25th Feb 1966 25th Dec 2014 Jacqueline sadly passed away on Christmas Day after a long and courageous battle with Huntington’s disease.

Deeply loved and missed by brother Gary Kernohan, children Lynsay and Lauren and all the family.

Elma Moore (Ballymena)

6th Jun 1944 9th Jan 2015 “It’s hard to say goodbye… her picture in my mind They’ll always be times I’ll cherish… and I won’t cry because She flew up to heaven on the wings of angels By the clouds and stars and passed where no one sees And she walks with Jesus and her loved ones waiting And I know she’s smiling saying “Don’t worry ‘bout me” Much loved and sorely missed by sons Richard, Darren and Ryan; sister Dorothy; nephew Davy and all the family.

HUNTINGTON’S DISEASE ASSOCIATION NORTHERN IRELAND Families at the heart of all that we do

STOP PRESS: New HDANI Support Worker Appointed Following stiff competition from a range of excellent candidates Sorcha is pleased to announce that we have appointed a new support worker. Dolores McBride will be based in Omagh and cover the Western and Southern Trust Area.

Dolores brings with her a wealth of experience of dealing with people in a variety of crisis situations through her work in both the public and voluntary sector.

A qualified counsellor and holistic therapist she will be a valuable asset to our team as we work to develop our services and maximise the practical and emotional support to our members.

It is intended that Dolores will start work in early June. Herself and Errol will have their own regional caseload and will each work 3 days a week, Monday to Wednesday and Wednesday to Friday.

There will be an opportunity to meet Dolores at the June support groups in Armagh and Omagh. I trust you will all give her a warm welcome.

Sorcha’s Cycle On 27th April our manager Sorcha McGuinness will leave Belfast and ride as part of the Cycle against Suicide to raise awareness of HD and funds for HDANI. Each day, for 14 days, she will cycle approx. 100km through the towns and villages of Ireland raising awareness of mental health support services and spreading the message that It’s OK not to feel OK and it’s absolutely OK to ask for help.

Suicide is globally the second highest cause of death among people affected by HD and depression is rife.

This fact while sad is unsurprising. As manager of HDANI she has seen first-hand the stress, social isolation, guilt, fear, helplessness, frustration and anger that comes with this disease.

Among the greatest challenges we face is the lack of knowledge of the disease- among both the public and professionals. This cycle challenge therefore is not only about raising money to help support the work of HDANI but also of raising awareness of the condition in each of the 28 stops along the route where she will be linking in with local mental health service providers and giving them information about the disease and linking them to our website and that of our colleagues at the Huntington’s Disease Association of Ireland.

If you would like to sponsor Sorcha you can text HDNI14 £5 to 70070 or visit our facebook page where you will find the virgin giving link.

Fundraising

Many thanks to everyone who has contributed to our funds in whichever way you have elected to do so. Could we encourage regular givers to consider donating by Standing Order?

It’s easy to set up... all you need is a bank account! It can be as little as £2.00 or as much as you want.

Please find enclosed a bank mandate for standing orders which includes a gift aid declaration if you are a tax payer... in which case for every £1.00 you donate the tax office gives us an additional 25p.

Please text

HDNI 14 £5 to

70070 If you already donate by Standing Order please note our new bank account details: Danske Bank Account No: 30047902 Sort Code: 950679

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Fundraisers and Donors 1st January - 31st March 2015 Apologies to Jackie Wilson for an error in the Christmas/New Year issue!

The ‘Donations’ entry in question should have read “Kyle FAMILY IMO Joan Kyle - £135” Jackie’s mum was a member and had been on our mailing list for many years. Sincere apologies to the family for any hurt caused by this unfortunate typo error DONATIONS Naomi Orr School of Dance £250.00 Shorts Foundation (match funding for A. Higgins Lap the Lough) £250.00 Honourable Irish Society (Coleraine) £350.00 C. Crean £70.00 M. Gaughan £30.00 G. Kernohan IMO Jacqueline Brown £20.00 Ebrington Primary School (Derry) £300.00 Oddballs Golfing Society £500.00 Friends and family IMO Elma Moore £590.00

EVENTS Olive Campbell & Friends (Fundraiser - a big thank you to Olive, Rebecca, Debbie, Audrey and Janice!) £1,345.00 Ballymena Utd. v Crusaders (Charity Match Collection) £700.00

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HDBUZZ SHORTS

Manager’s Report Dear members and friends,

The following excerpts from HDbuzz bring you links to the latest HD research online.

If you do not have internet access and would like to find out more about any of the articles below simply contact Errol 028 2177 1812 and he’ll be happy to print out the entire article(s) and post them to you.

It has been full steam ahead since my last update. What a busy few months it has been – campaigning for additional nurses, developing our next three year plan, recruiting staff, organising our conference, devising new projects and pursuing funding. I need a few extra hours in the day!

The campaigning has paid off to some extent already in that the Belfast Trust should hopefully be able to confirm the appointment of a new Band 6 nurse and plans are afoot for a regional co-ordinator. The Public Health Agency has also been planning to introduce rare disease advisors in each Trust area but more on that as news comes through.

We will continue to work with our friends on the Health Committee to drive forward change.

The next three years will be full of change and development for HDANI - I know change can be scary but there is nothing to fear in what is to come - an expanding team, new projects and activities and great benefits to our members while ensuring all the boring but essential back office business is up to date, accountable and open to scrutiny.

All the information will be available in the coming months and we hope to formally launch the strategy during a HD awareness week in June.

In the coming months we hope to add a new staff member to the team in the shape of a new part time support worker who will be based in the Southern and Western Trust areas. He or she will work 3 days a week alongside Errol who will be going

part time and covering the remainder of the province.

Interviews will take place the week of the 20th April and we hope to get someone in place as soon as possible. I know you will welcome and support them and most importantly benefit from their support and advice!

In addition to the fundraising efforts in the newsletter I would like to thank Mr Anthony McQuillan and the team at Glenstall IT for the incredible donation of their time and skills which will transform our whole communications system including an organisational database and file sharing system and new website, e-zine and newsletter. This will of course take time and an incredible amount of work but will make a world of difference to HDANI. I look forward to bringing you more exciting news and developments in our next newsletter in the meantime follow us on facebook or twitter to keep right on top of what’s going on. I’m off to change into the lycra and grab my helmetbut you’ll read all about that inside!

Take care

HUNTINGTON’S DISEASE ASSOCIATION NORTHERN IRELAND Families at the heart of all that we do

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Sorcha

Creatine and coenzyme Q10, trials that finish early, supplements, and getting involved http://en.hdbuzz.net/ podcast/3 Turning skin cells into brain cells: a Huntington’s disease research breakthrough? http://en.hdbuzz.net/183 Positive results announced for re-worked tetrabenazine drug in Huntington’s disease http://en.hdbuzz.net/184 Can this synthetic oil help feed the brain in Huntington’s disease? http://en.hdbuzz.net/185 mTORC1 tips the scales in Huntington’s disease mice http://en.hdbuzz.net/186 Drug Improves Huntington’s Symptoms in Mice – and Their Offspring http://en.hdbuzz.net/187 Unlocking the Potential of Antibodies as a Therapy for Huntington’s Disease http://en.hdbuzz.net/188 2015 Huntington’s Disease Therapeutics Conference: Day 1 http://en.hdbuzz.net/189 2015 Huntington’s Disease Therapeutics Conference: Day 2 http://en.hdbuzz.net/190 2015 Huntington’s Disease Therapeutics Conference: Day 3 http://en.hdbuzz.net/191 Taking new targets to the bank: the DNA repair protein ‘ATM’ is overactive in Huntington’s disease http://en.hdbuzz.net/192

HDANI SHORTS Facebook Page Copy the following link into your browser and like our HDANI Facebook page… you’ll then receive notifications of posts… It’s full of advice, health related items and information… feel free to share with your friends/colleagues!

Every Friday is ‘tagging day’... tag your friends and supporters and get them to like our page and build up our support! https://www.facebook.com/ pages/Huntingtons-DiseaseAssociation-Northern-Ireland/3 64489753708919?pnref=story

I Wish, I Wish I wish, I wish, We say it almost everyday, And if it doesn’t come true, We still pray.

I wish, I wish, We want things that we don’t need, Things that are pointless, And out of greed.

I wish, I wish, That people sick or dying, Will be happy, And not cry.

I wish, I wish, That you knew, These people need your help, and you could finally make a wish come true.

Katelyn Gribben (aged 13)

Squirrels may hold the key to preventing neurological conditions!

An article by the Daily Mail’s Science Correspondent Fiona McRae reveals exciting news of a potential new breakthrough which could have wide-reaching benefits for a number of neurological conditions…

“The secret of a squirrel’s hibernation could hold the key to preventing Alzheimer’s.

Other devastating conditions, including Parkinson’s and Huntington’s, could also be avoided or delayed, thanks to a British breakthrough.

Scientists from the Medical Research Council in Leicester have shown how a deep hibernation-like sleep cools the brain and protects it from degenerative diseases.

The discovery could lead to a drug that stops a host of crippling illnesses in their tracks.

Given in middle age it could keep the brain healthier for longer.”

Robinson’s Bistro

Rue Restaurant

Here’s how Brain Cooling works in squirrels “During hibernation, synapses - the connections between brain cells vital for the transmission of messages and processing of information - are broken, allowing the brain to cool.

When squirrels come out of their deep sleep, the synapses reconnect perfectly, and the Medical Research Council study showed that a protein called RBM3 is crucial to this. It is hoped that a drug that raises levels of RBM3 and keeps the synapses intact will keep the brain healthy.

This could mean delaying the onset of dementia- or even preventing it.”

Many thanks to Marilyn Kerr for sending in this interesting article!

Belfast support group held their annual Xmas dinner at Robinson’s Bistro in Belfast and Omagh support group held theirs in Rue Restaurant in Omagh… both dinners were welcome opportunities for social contact with other group members!

Limavady support group opted for a New Year Dinner in the Classic Restaurant in Limavady

The Classic Restaurant

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Charity of the Year Nomination from “The Sports Hut” 145 Fenaghy Road, Ballymena, Antrim BT42 1EA The Sports Hut features a quarter size indoor soccer pitch complete with showers, changing rooms and gym. Bubble Ball Football (and other suitable sports) can be held on the ‘astroturf’ soccer pitch.

The coffee shop upstairs holds about 20 people and features a pool table and viewing access to the soccer pitch. A large external building is converted into a “war zone” for military game-playing for all ages… (Nerf Guns, Laser Guns etc) Errol was contacted by Ben Fleming (manager) after the recent passing of a Ballymena woman who suffered from HD and whose daughter is a member at the Sports Hut training facility.

Along with owners Clifford and Debbie Adams, Ben felt that they would like to show support for the family by nominating HDANI as their charity of the year for 2015.

The club will run two events during the year for HDANI (tbc) and have taken receipt of HDANI collection boxes along with wristbands and pins to sell.

Ballymena Utd v Crusaders Charity Collection Davy Douglas from Ballymena, nephew of Elma Moore who sadly passed away from HD in January this year, organized a charity collection for HDANI at the Ballymena v Crusaders Irish Premier League match on March 14th.

Both teams have a strong connection with the HD community in Northern Ireland. Elma Moore’s brother Arthur Stewart was a much revered former captain and manager of Ballymena Utd as well as being a N.I. International, and nephew Davy manages the Ballymena Utd. Youth Academy. Our old friend Paul Leeman from Belfast captained Glentoran for a number of seasons before moving on to Crusaders last year and he and Davy Douglas arranged the insertion of a page on HD and the reason for the collection in their respective clubs’ match day programmes.

Collectors on the day were led by the indomitable Dorothy O’Kane (sister of Elma Moore and Arthur Stewart) and consisted of Cathal, Paula, Daniel and Fearghal McElhinney along with Errol. They collected £700 and would like to register their appreciation the fans and officials of both clubs for their generosity!

Black Santa Charity Sit-out at Christmas

http://www.thesportshut.co.uk The first Sports Hut event in aid of HDANI is a 24 hour football event! Members of teams that enter will each raise a minimum of £20 in sponsorship and the Sports Hut would be delighted if HDANI could raise a team to compete as well! Contact Errol if you’re interested in playing.

The date has not yet been set but the event will take place after the end of the Irish League season.

We have also been invited to run our own events on their premises subject to availability (they usually open at 6pm for training so most daytimes are free unless privately booked). Options for HDANI run events include Coffee Mornings/small parties/discos in the coffee bar; summer sports events for young people and adults using the soccer pitch and access to the WARZONE subject to availability and proper footwear!

So… it’s up to one and all to come up with ideas for events!! Contact Sorcha or Errol to discuss.

Staff Changes and Recruitment As many of you will be aware I had planned to retire at the end of March this year but ultimately I felt that this would leave a considerable short term gap in support for our members (especially with Majella’s continued absence).

So the board has agreed that it would be beneficial all round if I could stay on a little longer and not have to rush the handing over of a considerable number of cases and that I could be of some use in helping new recruits to settle in and become comfortably acquainted with my client list.

With that in mind, I shall be going part time from April 1st and we hope to have another support worker for the West in place by summer 2015 at which point the new support worker and I will each work 3 days a week. Interviews for new staff will take place week commencing 20th April.

I shall be covering clients from Northern, Belfast and South Eastern Trust with the new support worker covering Western and Southern Trust areas... more info to follow in next newsletter.

I shall also be delivering staff training to care homes based on the work of Jimmy Pollard which will, I hope, add another perspective to the excellent work that Majella had been doing in that area.

The Sit-Out takes place on the steps of St Anne’s Cathedral over the 10 days before Christmas, but funds are collected all year round.

The ‘Black Santa’ tradition at Belfast Cathedral was started by Dean Sammy Crooks in 1976. Concerned at the emphasis being placed on necessary and costly building programmes at the Cathedral, Dean Crooks decided to stand on Donegall Street in front of the Cathedral and beg for the poor and for charitable causes.

With a small barrel in which donations could be placed, and dressed in the familiar black, Anglican clerical cloak, Dean Crooks “sat out” each day of the week before Christmas. Thus began the tradition of Belfast’s Deans sitting out for charities. The local press described Dean Crooks as, Belfast’s Black Santa, and the description struck a lasting chord with the public.

Dean Crooks was succeeded by Dean Jack Shearer who involved members of the Cathedral Chapter in the Sit out. Under his leadership the event continued to develop so that by his last Sit out in 2000, a total of £2.2 million pounds had been raised for charities over the previous 24 years. Dean Houston McKelvey maintained this tradition throughout his ten years in office and the current Dean, John Mann (pictured) has continued to do so.

HDANI has been a grateful recipient of funds from Black Santa over the past number of years and this year our Chair Jennifer Warnock attend the annual service for the distribution of the funds collected at which £800 was allocated to HDANI in support of our fledgling Befriending Service.

HUNTINGTON’S DISEASE ASSOCIATION NORTHERN IRELAND Families at the heart of all that we do

Huntington’s Disease Association Northern Ireland (HDANI) selected as Beneficiary of Autoline’s 40th Anniversary Fund!

Last month Autoline Insurance Group launched a yearlong series of fundraising initiatives and customer reward promotions to celebrate their milestone fortieth year in business. The independent broker, headquartered in Newry with branches across Northern Ireland invited charities from all different sectors to receive £1,000 each from the 40th anniversary charity fund. With an overwhelming response HDANI based in Belfast has been selected at random as one of those to benefit.

Michael Blaney, Managing Director for Autoline said, “We are delighted to announce that HDANI has been selected as one of the charities to benefit from the fund. Staff from Autoline branches will be doing a range of fundraising initiatives in the months ahead and will hope that customers and suppliers will join in to help support charities such as HDANI. HDANI Manager Sorcha McGuinness said, “We are delighted to have been selected as one of Autoline’s 40th Anniversary Fund charities. HDANI offers a range of support services to the small community of people across N. Ireland who live with this rare disease. We hope that our supporters will get behind this inspiring campaign to help Autoline reach their target to help HDANI and the other 39 beneficiaries.”

Michael Blaney added, “We will also be offering a host of prize giveaways for customers through our Facebook and Twitter pages with tickets for concerts, major sporting events and hotel breaks up for grabs.

2015 is set to be one of our most ambitious years yet with a focus on supporting the communities in which we operate as well as continuing to offer competitively priced insurance and excellent customer service in the personal lines and commercial insurance market in Northern Ireland.

Errol

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Support - Belfast Pilot This scheme was piloted in Belfast over a period three months (excluding Xmas) and consisted of six sessions.

While the social aspect of the support group has always been, and remains, an essential element of the group it was felt that, particularly for new members, this was not offering enough.

It has long been clear that some form of counselling could be hugely beneficial for people living with HD but unfortunately these types of services are not always readily available on the NHS or from other sources... and, even when they are available, they are too often lacking in a specific knowledge of and understanding of Huntington’s. So this pilot was set up to explore the need for, and viability of, creating and offering such a service.

The scheme got off to mixed feelings and results in the first two weeks. Some members felt that John Campbell, the counsellor chosen to run the pilot lacked that specific knowledge and understanding that everyone feels is required and that the sessions were too generic in approach ... but... that begs the question “Who in Northern Ireland (apart from NHS genetic counsellors) does have the necessary knowledge and understanding for such an enterprise?”

Answer: No-one... until now!

John Campbell immediately felt, (in his own words) “overwhelmed by the experience of those first two sessions”. He wasn’t daunted however, and to his eternal credit he worked extremely hard, both externally and with the help of the group, to fill in the gaps in his understanding. His humility and commitment were evident by session three and he quickly fitted in as a member of the group. Sessions four and five were highly emotionally charged and serious and relevant topics were explored in a more focussed HD context in some depth. The open-ness and honesty of the members, often in difficult and emotional circumstances, created a mutual bond and a sense of elation in some cases.. an ‘outsider’ who really wants to understand and really wants to help had arrived in our midst! By the final session on March 5th I think it’s safe to say that John had earned the trust and respect of the group and I’m happy to say that these sessions will continue monthly until June at least.

A few words by John Campbell below: “The group therapy pilot scheme was based on the guiding principles of counselling as a means for the group to explore thoughts, feeling and behaviours. This was done in abundance with emotions running high within each session. The format of each session was based on a group selected topic ie depression, denial, responsibilities which came out of the presiding session. This led to an interconnectivity of the issues.

Recognising the cognitive features of HD facilitated the delivery of each session but I must stress it was not my recognition but that of the group which gave ‘realness’ to the process. This realness was evident in the number of questions posed within the six weeks, 20 in total, all relevant to the daily living of the person with HD and their carers.

To say it was a privilege to be involved in such a scheme is not enough. The sheer honesty and empathy of the group was beyond words. Thank you to all concerned.”

Stop Press!

Sorcha is delighted to announce that we have secured £4k from the Lloyds foundation specifically for the provision of counselling facilitators to support groups around the Province. Sorcha will commence project planning in the next month for regional support groups and group therapy at the Belfast group will proceed as usual for the next year.

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Nursing Shortage Highlighted on the BBC In an interview with BBC N. On December 15th Patrick Morrison, professor of human genetics at Belfast City Hospital, described the service for patients in Northern Ireland as being seriously overwhelmed and hit out at the lack of specialist staff accusing the government of “failing” patients with Huntington’s disease in N. Ireland.

At this critical time, when there is a recorded increase in people with HD coming forward, there were no dedicated specialist nurses in place across any of the five health trusts in Northern Ireland to care for patients with HD.

additional funding for a regional manager which would further enhance the service.”

In the meantime, patients told the BBC they are relying on their families and GPs for help.

One of those patients is Anne Boyd, who lives in west Belfast.

Ann said that as her memory has been affected she can no longer read. Her concentration and mobility are also affected and as she is confined to her home a lot of the time, she also suffers from depression.

“I get up every day not really knowing what it may bring,” she said. “It is really hard and not just for me, but The Belfast Health Trust is the only for my family.

Northern Ireland trust that has two They need help too.” dedicated Huntington’s disease nursing posts.

However, due to Ms Boyd’s brother has also been Majella being off work and the other diagnosed and another sibling has post vacant for over 18 months decided not to be tested. Her children neither post was filled at this time. are also faced with the dilemma The post was re-advertised shortly of whether or not to be tested. after the Stormont breakfast meeting Diagnosed in January 2014, Ms Boyd with MLA’s (see previous issue) said the news came as a relief. and candidates were scheduled to be interviewed for the post in late Nursing shortage update: February.

Interviews were held in Belfast for a new nurse to work alongside Prof Morrison went on to say “Patients Majella and we await further in Northern Ireland are being news.

We continue to work shortchanged. Two nursing posts in with the Health Committee to Belfast is clearly not enough. Every encourage the Health and Social trust needs dedicated nursing teams.

Care Board to develop a regional Not only are we receiving more strategy to ensure the most requests for testing but clearly there effective delivery of service to HD are more people out there requiring clients. help. This is a rare condition and specialist nursing is required. It puts a strain on everyone, including staff.

Therefore it needs planning on the part of the government when it comes to funding care. In Scotland and England there is at least one specialist nurse for every 50 patients with Huntington’s alongside specialist nursing units and nursing homes.

In Northern Ireland patients aren’t always receiving the appropriate care in the appropriate place.

A spokesperson for the Belfast Health Trust told the BBC “There is currently a proposal in process to secure

Befriending Scheme • In our next strategic plan 2015 2018 HDANI plans on establishing a volunteer befriending service in each of the 5 Trust areas.

• The aim is to reduce the social isolation experienced by those living with HD • This will require the commitment of volunteers in each area who will receive support, training and expenses.

• There are already opportunities for befriending in the Limavady area led

by Tina and Paula.

• Susan Mallon will be starting a service in the Belfast and north Down area.

Belfast & North Down Befriending Service: Hi everyone. I am Susan Mallon a volunteer with HDANI. I have met some of you through a bag pack and street collection.

I am a registered nurse and I have worked for 13 years in Stewart Memorial House and more recently in home settings. During this time I have nursed quite a few people with HD some from the same family. I saw first-hand the devastating affect this disease has not only on those afflicted

by HD but the affect it has on the whole family. The thing that has struck me the most is the loneliness and isolation HD sufferers experience which seems to increase whilst the disease progresses, just when they need support the most.

I would like to set up a befriending service with volunteers who would call on a regular agreed time to offer friendship and support and to help with outings. Before this can happen the volunteers would need to be police checked and trained for the task in hand. What are your thoughts on this would this be of benefit to you?

I look forward to your views.

If you would like to volunteer in your area or if you have a loved one who could benefit from this service please let us know as soon as possible so that we can assess the needs and resources required for a comprehensive provincewide service.

Contact: Errol on 02821771812 errol@hdani.org.uk or Sorcha on 07982843907 sorcha@hdani.org.uk

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