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News and Opinions about MS, Health & Disability

MP told ‘We don’t want you as patron’ by MS Society

andover_kit_malthouse  ms logo   Kit Malthouse MP not wanted as patron of Andover MS Society.

Not being ones to let the grass grow under their feet, members of Andover’s branch of the MS Society has reacted quickly to their patron voting for cuts to disability benefits.

Regular readers may recall that, on Friday, I posted a blog on the issue of the patron, local MP Kit Malthouse, voting for the £30 cut to ESA Work-Related Activity Group new claimants from April next year. That blog (if you have not read it, you can follow this link: http://50shadesofsun.com/?p=1875) brought howls of complaint against Mr Malthouse and demands for him to be removed from his honorary role.

I said his vote in the House of Commons and his role as patron of the MS Society branch were incompatible as the society has been actively campaigning against the cut.

Andover MS Society obviously feels the same way as it has now asked the MP to step down from being the branch’s patron. Donna Birch, branch Chair, explained: “Due to recent events we no longer feel that Kit Malthouse is a suitable patron, so we have asked him to step down from this role.”

So far, Mr Malthouse has not responded to my request for a comment.

Following my first blog on this subject, the MS Society UK commented: “Hi Ian, thankyou for posting this. We have over 280 branches across the UK, some of which ask local politicians to act as patrons or presidents, which can help raise their profile. These are not formal roles within the MS Society.

“We would hope, given Mr Malthouse has accepted this role with our Andover branch, he would understand why reducing ESA by £30 a week will make life harder for people with MS who come to claim this benefit. We fundamentally disagree with Mr Malthouse’s position and we’re deeply disappointed that the Government has ignored the concerns of organisations like the MS Society and voted for the changes to ESA.

“For more information on what the changes to ESA mean for people with MS, please follow this link http://mssoc.uk/1TzTWfh.”

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Home Alone : How young is too young to leave?

Home Alone was a box office hit about a young child accidentally left behind at Christmas.

Home Alone was a box office hit about a young child accidentally left behind at Christmas.

Many of us must have seen the 1990 American Christmas comedy Home Alone starring Macaulay Culkin as Kevin McCallister, a boy who is mistakenly left behind when his family flies to Paris for their Christmas vacation. Kevin initially relishes being home alone, but soon has to contend with two would-be burglars.

That was fiction but what about real life?

Much has been said, pondered or speculated about the what the law says about leaving children alone and unsupervised and this has been especially true in the UK after the mysterious disappearance of British three-year-old Madeleine McCann nine years ago on May 3, 2007.

in happier times: Gerry and Kate McCann with their twins and Madeleine.

In happier times: Gerry and Kate McCann with their twins and Madeleine.

She is believed to have been abducted from her family’s holiday apartment in Praia de Luz, Portugal, while her parents and up to seven friends enjoyed a night out in a tapas bar some 50 or so yards away. Madeleine was left sleeping in the same room as her younger twin brother and sister with no babysitter and one outside door left unlocked. Her parents sought to ensure the children’s safety through a series of checks being made by themselves or one of their friends every half-hour.

It was when it was Madeline’s mother Kate’s turn to check that she raised the alarm that her daughter was not in bed or anywhere in the apartment. Since then, there has been a wealth of people asking questions on social media and elsewhere about what the law says about leaving children alone.

When I was aged seven, my parents left my 14-year-old sister in charge when they went to see a movie. Later, when I reached 14, I regularly babysat youngsters while their parents went out. It paid quite well, I seem to remember.

So, is 14 some sort of magic age in UK law when you are considered mature enough to be responsible for younger children? And, at what age can you legally leave them alone?

Well, surprising as it may be, UK law doesn’t specify an age when you can leave a child on their own but it is an offence to leave a child alone if it places him or her at risk. So, it is up to parents to be responsible and to use their judgement on how mature their child is before deciding to leave him or her alone at home – or even in a car.

The children’s charity, the National Society for the Prevention of Cruelty to Children (NSPCC) has some pretty exacting guidelines which can be found on the government website that addresses the question of leaving children alone: https://www.gov.uk/law-on-leaving-your-child-home-alone.

The NSPCC says that children under 12 are rarely mature enough to be left alone for a long period of time; that children under 16 shouldn’t be left alone overnight; and that babies, toddlers and very young children should never be left alone.

There is also a stark warning that “Parents can be prosecuted if they leave a child unsupervised ‘in a manner likely to cause unnecessary suffering or injury to health’.”

 

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Have MS? Don’t give up, join a support group

MS Synergy poster

Support groups have a very important part to play and none more so than MS Synergy that operates in North Wales, UK.

Groups like MS Synergy enable people with multiple sclerosis to meet others in a similar position – while carers, family members and friends can get together with their counterparts as well as MS professionals and anyone with an interest in the illness.

It gives everyone the opportunity to meet, swap experiences and socialise regularly.

Synergy is an independent support group, not part of any other MS body, and operates as a small charity under UK charity law. It raises funds to meet its own expenditure and it is run by volunteer officers who do not receive any form of payment for their work.

I have been honoured to be the group’s secretary for the first two years of its existence as an independent charity and now, even though Lisa and I have moved to Spain, we remain committed to helping out from afar.

The publicity poster reproduced above was written and designed by me. It’s message is a simple one: Just because we have MS, there is no need to give up on life. We are people who have a disability, we are living with that disability and, most importantly, we are people – just like everyone else. People everywhere, with MS or not, can all have fun and dignity.

There are many support groups around the world, not just in the UK. If you think one might help you, then look for one near you. And, if you live anywhere in North Wales, just contact MS Synergy. Just email secretary@mssynergy.org.uk or telephone UK number 01444 390392.

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The gift of yourself must be included on Giving Tuesday

gift-never-wasted

December is here and we have been out and about. We had a delicious lunch on the terrace of a seafront café, overlooking the sandy beach at Garrucha. There were more clouds about today but only the high wispy ones; the sun shone through and it was lovely and warm in the sunshine.

Now, Tuesday may have been ‘Giving Tuesday’ and it may have been in its fourth year but what leaves me amazed is that this is the first year it has drifted into even the periphery of my attention. By profession I am a journalist, a news gatherer; how on earth does something like this slip past me?

Anyway, now I know that #GivingTuesday is a global day of giving that gains much of its impetus through the power of social media. Started in the USA, it is the Tuesday immediately following Thanksgiving and the two shopping events of Black Friday and Cyber Monday that are becoming more widely known in many other countries.

#GivingTuesday kicks off the charitable season, when many focus on their holiday and end-of-year giving. Since its inaugural year in 2012, #GivingTuesday has become a movement that celebrates and supports giving and philanthropy throughout the year.

So exactly what is #GivingTuesday?

Better late than never, I looked into this and found that it was created by 92nd Street Y – a cultural centre in New York City that aims to bring people together around the values of service and giving back. Apparently, it has been doing that since 1874 its efforts must be unsung as my wife Lisa, a native of New York City, has never heard of it.

Nevertheless, in four years #GivingTuesday has managed to connect diverse groups of individuals, communities and organisations around the world with the aim of celebrating and encouraging the act of giving. A team of influencers and founding partners, and there are some impressive names in those lists, joined forces to collaborate, offer expertise and work tirelessly – initially to launch #GivingTuesday and, since then, to continue to shape, grow and strengthen the movement.

Of course, ‘giving’ is a term that includes so much more than ‘donating’. Donations are gifts of money or other items but ‘giving’ includes not only these but also gift of time. Charities and other good causes would cease to exist if they did not have the support of volunteers who are willing to give their time and expertise to raise money or provide other valuable services.

There are volunteers who spend hours collecting clothes, bedding etc to send to trouble spots, there are those who organise lunch clubs for the elderly and needy, those who visit the sick and so on. There are so many more examples. They may or may not make donations too but they do give two of the most precious things of any human capacity – their time and their compassion.

In short, in any situation – whether charitable, personal or something else – the biggest and most important gift you can give is yourself.

 

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Lions gain freedom from concrete nightmare

lion before  lion after

Before – in a concrete hell in Romania.                  After – in a natural heaven in South Africa.

Big cats make a return to the spotlight today but this time it’s not Thomas Chipperfield and his lovely creatures. It is five who have just been rescued from a life of misery in Romania.

These lions have been in zoo that closed down as it failed to meet European regulations. In other words, they have been forced to live in conditions that are well below the standard those regulations were put in place to enforce.

However, the use of the regulations did not achieve the required result. The animals did not get better conditions, instead the zoo closed its gates.

Now, however, their lives have changed beyond all recognition as the two lions and three lionesses have been given new homes in the a big cat sanctuary in South Africa, all thanks to the effort and hard work of a not-for profit organisation called Four Paws.

When the zoo closed, the lions were left behind in a small concrete enclosure that was totally unsuited to their needs. Not one blade of grass did these magnificent creatures have, when they should really be enjoying a life in their natural surroundings, enjoying grass and other vegetation with trees to give shade from the sun.

It seemed like an impossible dream until Four Paws got to work and, after several months, their workers were able to gain approval to move those five and another from the Netherlands to the Lionnrock Sanctuary in South Africa.

On the Four Paws Facebook page, https://www.facebook.com/fourpaws.org, it says: “Before the journey began, the five lions underwent veterinary checks under anaesthesia. All five are in good health and ready for the long journey to South Africa. We will transfer them by car to Frankfurt International Airport, where they will departure on a cargo flight to Johannesburg. It is a long journey – but worth the effort. In less than 48 hours, these five lions will finally be in a species-appropriate home. They will feel the grass underneath their paws, will smell the fresh African air and will enjoy the first warm rays of the South African spring sun.

Now, the lions which were all born in captivity, are treading African soil in the land of their ancestors, and from the videos available on Facebook, they are doing pretty well on it.

The lion from the Netherlands was already in the care of Four Paws having been rescued from its life in Italy. There it had started life being photographed with tourists before being trained to perform. During one performance, there was an accident which led to hi losing his tail.

It would not be feasible to release any of these proud ‘Kings of the Jungle’ into the wild. In fact, it would be quite cruel because, having been captive since birth and used to being fed, they have not learnt the skills needed to hunt their prey or to survive without the help of man.

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Teenager with cancer receives cruel hoax offer

Alexis 1

How very cruel-minded and warped must someone be to make a fake offer of a $40,000 anonymous donation to pay for a sick girl’s cancer treatment. Yes, you read that correctly, the offer was a fake.

Just imagine how the teenage girl and her family must have felt when they discovered the offer was, in reality, a hoax. Add to that an image of the hoaxer somewhere being gleeful with the pain caused. Let’s hope the police do something.

It is disgraceful, inhumane and inhuman behaviour. It is the callous act of a coward.

Last month, Alexis Gould, of Utah, was diagnosed with stage three neuroblastoma, a cancer that affects the nerves, and her school launched a fundraising effort to help pay for her treatment.

Then Alexis’s family were delighted to learn that an anonymous donor had stepped forward to offer the lump sum. They must have thought that their dream had come true or that their prayers had been answered. But they came down to earth with a massive bump after a few days when Alexis’s mother Emily discovered the money was not there and never had been.

With an amazing attitude of calm, and great fortitude, Emily said to the Press: “It was a little bit hard, but we never wanted it to detract from the genuine love and support that we received from so many.”Alexis 2_edited

So, instead of dwelling on the obvious disappointment or wallowing in self-pity, the family has galvanised itself for action by concentrating on the positives. Emily said: “What others might deem as little acts of kindness, or little acts of love, mean the world to us.

“While $40,000 is a lot of money, it meant no more to me than the people who are struggling, who are living paycheck to paycheck and who donated five dollars.”

A Go Fund Me account has now been set up in Alexis’ name, and in one month has raised $29,000. That’s a tremendous amount but more is needed. Can you help? It doesn’t matter how small it may be; it might seem a cliché but it is true that every little bit helps. You can help this teenager who has just started high school by donating at her appeal site: https://www.gofundme.com/rf46474s

 

Main picture: Huffington Post

 

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