Lazarowicz: Fast-track benefits for terminally ill

‘long delays risk leaving terminally ill people destitute in the last months of their life’ – Mark Lazarowicz MP

Mark Lazarowicz MP is backing Gordon Aikman’s MND campaign and has called on the Government to fast track benefits for people like Gordon with terminal conditions.

Speaking in a debate in Parliament yesterday, the Labour MP for Edinburgh North and Leith called on the Government to fast track benefit claims from people with terminal conditions like Motor Neurone Disease and intervened to tell the Minister that the prolonged delays, in some cases of up to 18 months, could mean the outcome comes too late for some people with limited life expectancy.

He said later: “I strongly support Gordon Aikman’s campaign to fast track benefit claims from people with terminal conditions like MND: people are waiting 6 months and in some cases 3 times that just to have an assessment.

“Claims can be fast tracked where someone is not expected to live longer than 6 months but where does that leave someone with MND where the average life expectancy after diagnosis is 14 months?

“The Government should offer financial support to people suffering as a result of the delays caused by its own incompetence but first and foremost it should make sure that their claims are fast tracked.

“The Minister’s response in the debate was not acceptable: it’s shameful that people who are so ill should spend the last months or year of their life in financial hardship having to fight so hard for the benefits they are entitled to.”

He was speaking in a debate on the introduction of the new Personal Independence Payment (PIP), the disability benefit that is replacing Disability Living Allowance (DLA) which is designed to help seriously ill or disabled people with the extra costs their condition entails.

It was announced on Thursday that responsibility for PIP is to be devolved in future and Mark has called for the roll-out of the new benefit to existing DLA claimants to be stopped until it is because of the huge backlog of assessments.

That was also the conclusion of the House of Commons Work and Pensions Select Committee: it reported last March that even where someone did have their claim fast tracked because they were not expected to live more than 6 months, the time taken to process their claim had increased from typically 8 days with DLA to 8 weeks with PIP.

Mark Lazarowicz says the Government has moved the goalposts: its original target was for the whole process from claim to decision to be completed within 16 weeks, now it is that all assessments should be completed within that time and it is even failing that target.

Gordon Aikman’s story

I’m dying. And fast.

That – in short – was what my doctor told me just a few weeks ago when I was diagnosed with Motor Neurone Disease.

It’s not the news you expect when you are 29 years old.

MND is a rare, progressive and debilitating disease that attacks the brain and spinal cord. It leads to weakness and muscle wasting and will affect how I walk, talk, eat, drink and breathe.

There is no cure.

That’s why I am doing all I can to raise money for MND Scotland – a great charity that funds and promotes research into the disease and provides support to people affected by Motor Neurone Disease.

It’ll be too late for me, but we must find a cure for the next generation.

With your help I can turn a negative into a positive. Please dig deep and donate what you can today.

100% of the money you donate will be spent on trying to find a cure.

Thank you

Gordon

P.S. Please visit www.gordonsfightback.com to tell your your MP and MSPs to back my campaign to double MND research funding.

To date Gordon has raised £216,683.88 of his £250,000.00 target. 3,690 individual donations have been made.

https://www.justgiving.com/gordonaikman/

Seeing red on 6 February

British Heart Foundation says Wear It. Beat It on 6 February

One in four of our loved ones are lost to heart and circulatory disease, so on 6 February we’re asking the nation to show their support by wearing red and hosting an event to fund our life-saving research.

Whoever you are doing it for, and whatever you decide to wear, you can get involved in your workplace, school or with friends and family.

Hosting an event is easy and we’ve got loads of ideas to help get you started.

When you sign up we will be able to download our fundraising kit full of fun ideas to hold a successful event and raise money towards our fight.

CORONARY HEART DISEASE IS THE UK’S SINGLE BIGGEST KILLER

For over 50 years we’ve pioneered research that’s transformed the lives of people living with heart and circulatory conditions. Our work has been central to the discoveries of vital treatments that are changing the fight against heart disease.

But so many people still need our help. From babies born with life-threatening heart problems to the many Mums, Dads and Grandparents who survive a heart attack and endure the daily battles of heart failure.

Join our fight for every heartbeat. Every pound raised, minute of your time and donation to our shops will help make a difference to people’s lives.

Wear red and organise an event on 6 February and join us in our fight against heart and circulatory disease.

Hair today …!

Edinburgh College students help George Watson’s pupils donate hair to charity

Edinburgh College hair and beauty students have been using their scissor skills to chop George Watson’s College pupils’ hair to help make wigs for children with cancer. The students visited George Watson’s to cut the pupils’ hair in aid of the charity the Little Princess Trust.

The Little Princess Trust provides real hair wigs to children with hair loss due to cancer treatment. Two members of staff and 12 pupils from P6, S4, S5 and S6 each donated seven inches of their hair to the charity. Each girl’s hair was braided into a seven-inch ponytail to be cut off and made into a real hair wig.

Thirteen Edinburgh College hairdressing students cut the ponytails off in front of the whole Senior School, before providing each volunteer with new hairstyles with the help of lecturers Adelle Smillie and Nicky Heneke.

The pupils had been inspired by an assembly in early December, where PE Teacher Kerry McNaughton and S1 pupil Ella Hopley had their hair cut in front of the school for donation to the charity.

Good listeners sought by Edinburgh-based helpline

GOOD LISTENERS SOUGHT BY EDINBURGH-BASED HELPLINE

An Edinburgh based helpline for stressed parents and carers is looking for volunteer call takers. ParentLine Scotland took more than 4000 calls from anxious mums, dads and carers from across the country last year.

The charity offers a helpline, email and web-chat service, for anyone caring for or concerned about a child. It is run by CHILDREN 1^ST which works to ensure every child and young person in Scotland has a happy, healthy, safe and secure childhood.

Helpline Manager Jill Cook said: “Our volunteers make an enormous difference to the lives of mums, dads, carers, and professionals just by being there to listen and reassure. It’s a vital service and we ensure they’re ready for the role with 40 hours of high quality training. They also have back-up from a supervisor.”

Volunteers at ParentLine Scotland give a minimum commitment to a year after training. The charity says it’s looking for caring, non-judgemental people who are interested in the wellbeing of children and young people. Calls can be about all sorts of issues from bullying to separating families, teenage behaviour and toddlers tantrums.

Volunteer Janin Pohl (40) said: “Whatever people call with we take it seriously, it’s not trivial. In that time they are valued. You don’t often find out how things go but at the time you have that sense that there is now a bit of light at the end of the tunnel.”

The next volunteer training course starts on 31 January. To find out more contact parentlinescotland@children1st.org.uk

ParentLine Scotland is open 365 days a year on 08000 28 22 33. You can also get in touch by web-chat at www.children1st.org.uk/parentlineor by email parentlinescotland@children1st.org.uk

Volunteer Profile

Janin Pohl (40) from Edinburgh has been a ParentLine Scotland volunteer for three and a half years. She was born in Germany and travelled before settling in Edinburgh seven years ago. She is trained in counselling and shiatsu massage. Janin is blind.

How did you get involved?

“When I saw the advert for ParentLine Scotland I came at it from the perspective of a child. There are so many things that aren’t talked about in families. They’re swept under the carpet or people never say how they are feeling and I thought maybe it’s like that for adults too. Plus I’d done counselling training and this was a way I could use my skills. I’d been volunteering from home and I thought it would be good to go to an office with a team and a supervisor and be with people.”

Why do you think ParentLine can help even when friends and family can’t?

“You can decide when you want to talk and the caller is in control. They can say things they would never say at home. Some people do have support but find it easier to talk to a stranger who will not judge them or their situation.”

How do you cope with calls that are upsetting?

“If I have a difficult call the most important thing is to acknowledge how it is making me feel. If I feel sad then I am sad. If I need to I can get support from the supervisor and we can talk about it.”

What would you say to someone considering volunteering?

“I’d say it’s always good to give something a try. You don’t need to have a family of your own. As someone from outside of the family you have perspective. It’s about being there with them accompanying the person in what they are going through.”

Macmillan tops 2014 charity poll

Macmillan Cancer Support was the top charity brand of 2014, analysis from YouGov’s CharityIndex has shown. Macmillan is named the research company’s best charity brand for the second year running.

YouGov’s 2014 CharityIndex, which is compiled using data on the public’s perception of charities on a daily basis, ranked Cancer Research UK in second place (up from third in 2013), and armed forces charity Help for Heroes in third (down from second).

The rest of the top five is rounded off by the British Heart Foundation in fourth position (which moves up from sixth place last year) and the Royal British Legion in fifth (which drops by one).

Across the top ten charity brands last year only one, the Royal British Legion, increased its average year-on-year ‘buzz score’. It’s score rose by 0.6 points following the hundredth anniversary of the start of World War One which generated heightened media coverage. One other, Marie Curie Cancer Care, stayed exactly the same. However, all of the other charities in the top ten had lower average scores across 2014 compared to 2013.

CharityIndex measures the public’s perception of charities on a daily basis across a range of measures. YouGov’s 2014 rankings were compiled using Buzz scores from across the year. Buzz scores measure whether people have heard good versus bad news about a charity in the previous two weeks.

YouGov’s 2014 end of year charity brand Buzz rankings (2013 rank in brackets):

1 (1) Macmillan Cancer Support – 18.3

2 (3) Cancer Research UK – 12.8

3 (2) Help for Heroes – 11.2

4 (6) British Heart Foundation – 7.6

5 (4) Royal British legion – 7.3

6 (8) British Red Cross – 6.7

= (5) RNLI – 6.7

= (9) Dogs Trust – 6.7

9 (12) Marie Curie Cancer Care – 6.6

10 (7) Guide Dogs– 5.8

Briony Gunstone, Associate Director at YouGov, said: ‘This is the second year we have released end of year charity brand rankings and Macmillan Cancer Support once again heads the list. It is notable just how stable the top ten is. Clearly these charities are all still engaging in activity that is achieving cut through among the public.

“One area that is worth watching over the next 12 months is that – with just two exceptions – there has been a small decrease in the scores across the charities on the list. It could be a small wobble that will right itself next time. If it continues into next year’s figures, though, it could speak to a wider problem among the sector.”

Earlier this month Macmillan Cancer Care released a study that showed there will be a record high 2.5 million people living with cancer in the UK in 2015, an increase of almost half a million people over the last five years.

Letter: Putting Children First

Dear Sir/Madam

Sadly this time of year sees a rise in the number of people seeking help from family solicitors to divorce or separate. We want as many parents as possible to know about the help available from the Family Decision Making Service.

We know that children cope better with separation when their parents work together to reduce conflict. We also know that’s not easy and that’s why we are here to help.

Three well-respected children’s charities work together to deliver this one-stop-shop service covering legal advice, support to make parenting plans and emotional support. Our help is completely confidential and free of charge.

More information and help is available at ww.familydecisionmaking.org.uk or by calling 08000 28 22 33

Yours faithfully
Alan Forgie
Family Decision Making

STV Appeal cash for Changeworks

Changeworks receives £2,000 from the STV Appeal

Newhaven Road-based environmental charity Changeworks has been awarded £2000 from the STV Appeal Awards 2014. The money will be used to provide reflective radiator panels and emergency radiators to those most in need – perfect timing as temperatures continue to plummet.

Changeworks is a local environmental charity and thriving social enterprise which provides practical ways for people and organisations to live and work more sustainably. The service supports individuals, communities and organisations to deliver practical solutions that reduce carbon emissions, fuel poverty and waste by managing resources more efficiently.

Changeworks helps householders to lower energy bills; reduce, reuse and recycle; install renewable energy and heating systems; offers waste education for pupils, teachers and Early Years practitioners; and provides consultancy advice, project management and training to support the efficient management of resources and behaviour change for organisations.

The STV Appeal is committed to making a difference in the lives of children and young people living in poverty in Scotland. Across the country, 220,000 children live in poverty and figures from the Campaign to End Child Poverty show that in Edinburgh it’s actually 21.1% of children – more than one in five. Changeworks is one of the projects the STV Appeal is supporting in Edinburgh.

Since launch in 2011, the STV Appeal has raised over £8.2 million with 297 big and small grants distributed to projects across all 32 local authority areas in Scotland, providing much needed support to over 37,000 children. The money raised is distributed to provide practical help like food and warm clothes; create opportunities for training and employability; and enable social and emotional support for those who need it most.

Sam Mills, Head of Projects at Changeworks, said: “We are delighted to be awarded this money to support our work helping families to better afford being warm at home. We will use the award to provide reflective radiator panels and emergency radiators to those people most in need. This practical support will be much welcomed at a time when the wintry weather continues, energy costs are rising, people’s incomes are increasingly stretched and families are struggling to keep homes warm.”

Rob Woodward, STV CEO and trustee of the STV Appeal, said: “The money donated to the STV Appeal remains in Scotland and will help bring about a positive change to the lives of vulnerable children and young people on our doorstep. With the help of the extraordinary fundraising efforts taking place in communities across the country we have raised an incredible £2.6m in 2014 allowing us to make grants to 297 projects. We are extremely grateful to everyone who supported this year’s Appeal.”

Sir Tom Hunter, trustee of the STV Appeal, said: “Yet again the people of Scotland have cast their vote – end child poverty. Through the STV Appeal we are attempting to deliver sustainable solutions to do just that. It is simply unacceptable in modern Scotland to still have young people debilitated by poverty, through this project and many more the people of Scotland are doing their level best to combat poverty.”

Sir Ian Wood, trustee of the STV Appeal, said: “The generosity of the people in Scotland who provide such great support to the STV Appeal is incredibly encouraging and heart-warming. However, it is deeply concerning that there continues to be a significant requirement across Scotland for financial support for child poverty.

“Developing Scotland’s Young Workforce, a commission I chaired recently, has the overarching aim to enable Scotland’s young people to move into sustainable employment upon leaving education. But how can they achieve positive destinations if they have a less than adequate start in life?

“I sincerely believe that the grants donated by the STV Appeal can have a significant impact on the lives of Scotland’s young people and make a real contribution to eradicating child poverty in Scotland.”

The STV Appeal 2015 is now well underway with an exciting line-up of fundraising activities planned for the year ahead.

Fun on the Run in 2015

It’s never too late to start your New Year resolutions and this year’s Big Fun Run series gives people of all abilities the chance to kick start a new, active 2015.

Set in 18 of the UK’s most iconic parks from Edinburgh to Brighton, the 5k events are aimed at all members of the family, with entry free for children under 5.

Edinburgh’s 5k Big Fun Run event takes place on

Sunday 11 October in Holyrood Park.

The emphasis is on fun at the charitable events, where over £200,000 was raised for good causes last year. Organiser GSi Events, who also host the Edinburgh Marathon and Bournemouth Marathon say: “Each run has a friendly atmosphere whilst offering an achievable challenge “

Big Fun Run Event Director, Neil Kilgour said: “Tens of thousands of people take part in Big Fun Run every year, it attracts people of all shapes, sizes and ages. No event is timed, it is all about having fun and raising funds for a charity close to your heart.

“It is a great event for all the family and it is not unusual to see grandma, mum and daughter all lining up together at the startline. We also have many people taking part in fancy dress to add to the feel good atmosphere.”

Among those set to enter is Karen Marshall who intends to take part in the Victoria Park event in London on Sunday 1 November. “We are running as a family group for our Mum Annie, who has stage 6 Alzheimer’s, giving the money we raise to the Alzheimer Society.” Karen said.

“We are thinking of bringing her on the run with us in her wheelchair and we’ll all, including Mum be wearing our ‘Running for Annie’ T-shirts.” They also took part in last year’s event at the East London venue.

“We had a fabulous day out,” Karen recalls. “We wanted to try to raise some money for the Alzheimer’s Society – Mum loves being outside so we decided to run 5k with the Big Fun Run as a family group.

“We ran with Mum in her wheelchair and she managed to walk over the finish line herself at about the 40 minute mark to huge cheers from the crowds. Everyone was so helpful and supportive. We couldn’t have wished for a better fund raising day and overall a lovely family day out.”

The Big Fun Run events run from July to November, to see all the venues and to find out how to enter, visit www.bigfunrun.com

Sign up for Macmillan’s Mammoth Quiz

Thinking caps on for 27 February

The Macmillan Mammoth Quiz is back, now in its 7^th year with a brand new, brain-teasing quiz for 2015!

The Mammoth Quiz organised by the Oundle Macmillan Committee is Macmillan’s nationwide quiz. Simply put, it is the same quiz, being held on the same day, at the same time, throughout the country.

The mammoth quiz even holds the Guinness World Record for the world’s largest simultaneous quiz. We need you to help make the 2015 Macmillan Quiz the biggest and best yet and help us to reach our target of over £200,000.

Macmillan are looking for local groups and businesses across the UK to host a quiz on 27 February 2015 to raise vital funds for people affected by cancer.

It’s a really fun and easy way to raise money for Macmillan, and you can hold your quiz anywhere from the local pub or bowling club to the office or school. Previous participants have commented “It was a great Quiz and everyone enjoyed it tremendously” and that “the questions are so interesting and catch the imagination”.

It costs £10 to sign up to host a Mammoth Quiz. You will then be sent a welcome pack with a 2015 quiz and fundraising materials. Brand new this year is the Macmillan Mammoth Quiz website

www.macmillanmammothquiz.co.uk

On here you will find tips for organising your quiz, posters and tickets, a bit of information about Macmillan and even some sneaky sample.

To register for your 2015 quiz pack, find out more about the Mammoth Quiz and start downloading sample questions and fundraising materials, log on to:

www.macmillanmammothquiz.co.uk

or email mammoth.quiz.uk@gmail.com

Charity appeals for daffodil volunteers

Marie Curie is appealing for people in Edinburgh and Lothians to donate their time to collect for the charity’s annual Great Daffodil Appeal this March.

The appeal is Marie Curie’s biggest fundraiser and the charity needs volunteers to encourage people in the local community to give a donation and wear a daffodil pin. The money raised from the Great Daffodil Appeal will help Marie Curie Nurses care for people with a terminal illness in their own home or at the Marie Curie Hospice in Edinburgh so they can spend more time with the people they love.

Fiona Beaton, Marie Curie Community Fundraiser for Edinburgh and Lothians, said: “We need over 500 people from Edinburgh and Lothians to help with our collections this February and March. Donating just one or two hours of your time to the appeal will allow Marie Curie Nurses to provide more free care to terminally ill people and their families at the time when they most need support, both through care in their own homes and in the Marie Curie Hospice Edinburgh.”

Di Shakspeare, Volunteer Collector from East Lothian said: “I was previously a Marie Curie Registered Nurse for twenty nine years so I know the difference that Marie Curie can make to local families, allowing them to rest knowing that their loved ones are in safe hands. On my retirement, I decided I wanted to help with the charity as a volunteer. In my experience, being a collector is a lot of fun and a great way to meet new folk, some with their stories to tell, while also raising funds and awareness for this wonderful cause.”

To volunteer to collect for Marie Curie and support the Great Daffodil Appeal call Fiona on 0131 470 2291, email fiona.beaton@mariecurie.org.uk or visit www.mariecurie.org.uk/daffodil.