Holyrood Election – Five Calls from the Cockburn Association

Five questions for prospective local candidates in the upcoming Scottish Parliamentary election

For almost 150 years the Cockburn Association has campaigned to preserve, protect and promote the built heritage, natural environment and civic amenity of Edinburgh and its surrounding area.

Our passion has been backed by an array of professional expertise. The city we cherish today, with its dramatic skyline and World Heritage Site rather than motorway interchanges, owes much to those efforts.

However, recent years witnessed pressures as Edinburgh has increasingly become the main dynamo of the Scottish economy, at the same time as Holyrood and the City Council have set ambitious net zero carbon targets. 

In addition there are the challenges presented by Covid, which has highlighted the importance of freely accessible, good quality parks and other public space for health and wellbeing, as well as the need to tackle inequalities.

The Cockburn Association believes that the climate emergency, public health and the legacy from pre-pandemic inequality meant that “rebuilding” should not mean resetting the clock to 2019.

In particular, we urge those seeking to represent Edinburgh’s citizens in the Parliament to recognise that many Edinburgh residents, particularly those living in the city centre, have been alarmed by the over tourism of the past few years.

Another decade like the last one will drastically change the character of the city, leaving it less resilient in the face of the next crisis.

Those elected to Holyrood will face intense lobbying by representatives of interests keen to reaffirm their free reign to use the city’s parks, open green spaces and residential blocks for their respective private commercial benefit, including the events, festivals and short-term letting industries.

We ask our representatives to ‘build back better’ rather than re-enact 2019. The Cockburn’s “Our Unique City” manifesto presents the case for the path the capital should take.

As local residents make a decision as to which candidate they will vote for, the Cockburn has five “asks” to put to each person who wishes to represent the city of Edinburgh constituencies or the Lothians region:

Will you stop the commodification and privatisation of Edinburgh’s cherished public places?

Access to public streets, parks and open spaces should always be free and unrestricted and the availability of open space for physical and mental wellbeing has never been so important as it is today. When events are permitted, infrastructure, such as physical and visual barriers, must be minimised and removed as quickly as possible.

Soft-surfaced spaces should never be used for events that require significant constructions. Continual replacement of turf and the damage to trees resulting from events is unsustainable, expensive and simply wrong. Commercial interests should not determine how public spaces are used.

Will you commit to the regulation of Short Term Lets in Edinburgh and their overall reduction, returning these homes to permanent residential use?

The last decade has seen an exponential growth in unregulated short-term-let accommodation.

This has hollowed out the city centre, displacing permanent residents and replacing them with holiday guests and party flats. This trend must be reversed with clear and unequivocal regulation implemented urgently. The unsustainable number of current short term lets needs to be reversed, with significantly enhanced enforcement action.

Will you support better planning and building standards to improve the quality and amenity of new housing?

The global pandemic has illustrated the importance of quality spaces within the home and its immediate environs. More home working will require better minimum space standards to ensure healthy working habits.  Increased and innovative outdoor space in housing developments (both quantity and quality) would encourage greater well-being and active family environments. 

The UK has some of the smallest space standards for housing in Europe.  A return to the Parker Morris Standards of the 1960s (updated, of course) is required and a move beyond minimum standards for climate mitigation and carbon management.

Will you incentivise the maintenance and care of our traditional building stock by supporting the reduction of VAT on repairs to zero?

The most sustainable building is an existing building. In a city defined by its historic and traditional architecture, incurring VAT on maintenance and refurbishment costs is a significant financial burden. 

It results in less work for more money. It acts as a disincentive for homeowners to invest in the fabric of their homes, reducing sustainability and increasing fuel poverty.  The Cockburn first called for tax relief on heritage properties in 1935 and we do so again. 

Will you ensure that funding for tourism and events in Edinburgh results in direct support for local businesses and cultural organisations?

Edinburgh’s hospitality, service and cultural sector must be supported and championed, rather than face continued publicly subsidised and unfair competition from temporary ‘pop-up’ operators and event promoters, diverting much-needed trade away from struggling, long-established local businesses.

The Scottish Parliament regularly supports local community wealth-building initiatives elsewhere in Scotland, focused on micro rather than macro-economic recovery opportunities, this principle must also be applied in Edinburgh too, especially in the post-pandemic era.

We would be delighted if readers of this piece put one or more of these questions to their local Edinburgh constituency or Lothian List candidates.

Before going to the polls it is hugely important that you hear the thoughts of each prospective candidate on these vitally significant issues and receive a commitment to action each one during the next five years if successfully elected to the Scottish Parliament.

A full list of Edinburgh Constituency and Lothian List candidates can be found here.

UK health ministers’ statement on JCVI vaccination priority advice

A joint statement from the 4 UK health ministers on JCVI advice for phase 2 of the COVID-19 vaccination programme

The independent Joint Committee on Vaccination and Immunisation (JCVI) has today published its final advice for phase 2 of the COVID-19 vaccination programme, setting out that the most effective way to minimise hospitalisations and deaths is to continue to prioritise people by age.

In line with its interim advice, the JCVI has recommended an age-based approach with adults aged 18 to 49 prioritised in descending age order as follows:

  • all those aged 40 to 49 years
  • all those aged 30 to 39 years
  • all those aged 18 to 29 years

In addition, data indicates that in individuals aged 18 to 49 years there is an increased risk of hospitalisation in males, those who are in certain black, Asian or ethnic minority (BAME) communities, those with a BMI of 30 or more (obese/morbidly obese), and those experiencing socio-economic deprivation. 

JCVI strongly advises that individuals in these groups promptly take up the offer of vaccination when they are offered, and that deployment teams should utilise the experience and understanding of local health systems and demographics, combined with clear communications and outreach activity to promote vaccination in these groups.

Individuals who are at increased risk of severe outcomes from COVID-19 are likely to be vaccinated most rapidly by an operationally simple vaccine strategy. JCVI will continue close monitoring of the programme in terms of safety, effectiveness and uptake, and will update its advice as required.

All 4 UK nations have agreed to follow the JCVI’s recommended approach, with the understanding that age is assessed to be the strongest factor linked to mortality, morbidity and hospitalisations, and because speed of delivery is crucial as we provide more people with protection from COVID-19 across the UK.

The UK remains on course to meet the target to offer a vaccine to all those in the phase 1 priority groups by mid-April, and all adults by the end of July.

The UK-wide agreement to follow the prioritisation advice of the JCVI for phase 1 of the vaccine deployment has allowed a consistent rollout of vaccines across the UK, and seamless coordination between England, Northern Ireland, Scotland and Wales.

Signed:

Matt Hancock, Secretary of State, Department of Health and Social Care

Robin Swann, Minister of Health, Northern Ireland Executive

Vaughan Gething, Minister for Health and Social Services, Welsh Government

Jeane Freeman, Cabinet Secretary for Health and Sport, Scottish Government

Sanitising Your Golf Equipment

As lockdown measures ease, more golfers are preparing to get back out on the course – but it is essential that care is still taken before teeing off. Not only should we continue to observe social distancing but making sure golf clubs and equipment are cleaned to prevent the spreading of germs is vital.

Eager to help prevent spreading of the Covid-19 virus, experts at GolfSupport.com have provided tips on the best ways to clean golf equipment:

1. Golf club heads

After a long day at the course, your golf clubs are bound to collect dirt and debris. Follow these simple steps to keep them sparkling and germ-free:

  1. Add 2-3 teaspoons of dishwasher liquid or soap to a bucket of warm water (enough to cover the club heads). Ensure it isn’t hot, as this may loosen the club head from the shaft.
  2. Submerge dirty club heads into the water for 5-10 minutes to loosen any dirt.
  3. Remove each club one-by-one and use an old toothbrush or soft-bristle brush to scrub away any stubborn dirt, ensuring you catch the back, front, bottom and each individual groove.
  4. Run the cleaned club heads under water to wash away any remnants, avoiding getting the shaft and grips wet.
  5. Dry with a towel. Ensure nothing is left damp as this is when rust can develop.
  6. To give club heads an extra shine, gently rub in steel or chrome polish in circular motions and leave for a minute. Then ensure you remove all the polish – any remaining grease could negatively affect your game!

2. Golf club shafts
Golf club shafts can also be prone to dirt. To remove dirt, use a damp cloth and clear any grime from the shaft, drying it thoroughly with a towel afterwards.

If your club becomes rusty: 

According to a study by End of Tenancy London, vinegar comes out on top for the best multi-use disinfectant. So why not utilise it for your golf clubs too? Apply a little vinegar on the shaft with a cloth and gently remove any residue, ensuring you don’t scratch it. Finish by drying thoroughly.

3. Golf club grips

Golf grips are the most touched area of the club and can easily get dirty/worn from sweat, so they require regular cleaning.

Clean golf club grips after each session by using a damp cloth to wipe the entire grip’s surface, ensuring it isn’t too hot as this could damage it.

4. Golf balls

During a typical 18-hole round, golf balls are battered, beaten and subjected to all the elements. Not to mention the hundreds of tiny dimples that are experts at finding dirt.

Dirty golf balls can affect your game more than you’d think! Add soap, dishwasher liquid or our trusty friend vinegar (for a deeper clean) to a bucket of warm water and soak the balls for 15-20 minutes. If necessary, use a sponge and/or toothbrush to remove dirt that won’t budge. Don’t forget to dry them fully with a towel.

5. Golf bags and club head covers

Whilst unconfirmed and still a matter of debate, the coronavirus could live on clothing and canvas materials for up to two days. Remove this risk by cleaning your golf bags and club head covers as follows:

  1. Remove all contents from the bag/clubs from their covers.
  2. Depending on the material, lightly spray water all over the surfaces.
  3. Using a soap and warm water solution, scrub the bag and covers clean with a cloth. Be careful not to scrub too hard – you may damage the material.
  4. Use a hose to rinse/run them under clean water and assess for any further stains.
  5. Remove any stubborn stains by spraying with a stain remover, then allow them to rest. Gently scrub it if required.
  6. Once clean, allow the bag/covers to dry overnight – avoid leaving them to dry in the sun as this can discolour them.



6. Golf clothing

To clean dirty golf clothing, simply run them through the washing machine after each session. However, for clothes that smell or are particularly dirty, consider:

  • Avoiding using fabric softeners – they stop the odours and sweat from being washed out, in fact locking in the smell for your next practice.
  • Adding baking soda to laundry – one cup per wash deodorises and softens clothes.

We hope these tips on cleaning golf equipment can help avid golfers enjoy the wonderful sport whilst preventing the spread of coronavirus!

https://www.golfsupport.com/

Rathbones supports Scottish Ballet by becoming their Corporate Dance Partners

Sponsorship en Pointe!

  • Rathbones commits to a 12-month corporate sponsorship
  • Sponsorship is welcomed following a challenging year for the arts industry as venues across the country remain closed

Rathbones has committed to a 12-month corporate sponsorship with Scottish Ballet, supporting their return to the stage in the coming year.

Scottish Ballet strives for excellence across everything that it does, placing particular importance on being inclusive and sharing the joy and benefits of dance with everyone, regardless of age, ability and background.

Rathbones wants to support Scottish Ballet in this and is delighted to become a Corporate Dance Partner and support their transition back to live events.

Founded in 1969, Scottish Ballet is based in Glasgow and funded by the Scottish Government. The company performs regularly across Scotland, throughout the UK and internationally, inspiring on stage and beyond.

The past year has been a challenge for everyone in the arts industry with venues closed, loss of income and uncertainty on dates for a return to live performances. Rathbones’ sponsorship aims to support Scottish Ballet during this period of transition as restrictions ease and life returns to normal.

Throughout the last year Scottish Ballet has been delivering everything that it can online. From ballet classes for absolute beginners to advanced dancers, alongside a weekly programme of dance health classes for those living with neurological conditions.

As well as creating and sharing new dance films to presenting dancer and creative team talks to its membership, Scottish Ballet also produced a critically acclaimed full-length feature film The Secret Theatre for audiences last Christmas. All of which have kept audiences at home and abroad entertained.

Scottish Ballet’s ambitions to promote Scotland’s pioneering spirit far and wide and explore new styles and push creativity chimes well with Rathbones’ own aim to Look Forward.

As part of the sponsorship Rathbones will be able to offer exclusive access to upcoming virtual events to clients, as well as the opportunity to attend live events when possible.

Adam Drummond, Regional Director at Rathbone Investment Management comments: “Scottish Ballet celebrates Scotland, showcasing our collective drive, passion and creativity across the world. We are proud to be able to sponsor such a vibrant and talented organisation, particularly at this challenging time for the arts industry.

“While theatres and other performance venues went dark last March, Scottish Ballet has continued to delight, support and interact with its members online. We are looking forward to making the most of these virtual events while we can, and to returning as audience members to enjoy the company’s live performances.”

Christopher Hampson, CEO/Artistic Director at Scottish Ballet: “We are delighted that Rathbones Investment Management is supporting the arts of Scotland through joining the Scottish Ballet family as Corporate Dance Partners. 

“We look forward to welcoming their guests and clients to our events, online and in person as we work towards our return to the stage.”

Politcal parties must address voter priorities, says STUC

The STUC has called out politicians for the ‘suffocating and self-obsessed debate’ on the parliamentary tactics for or against a second independence referendum rather than addressing the concerns of most working-class people in Scotland.

The STUC remains committed to Scottish self-determination and supports a second referendum if that is the clear will of the Scottish people, but will challenge all parties contesting the election to also address the priorities of voters – a jobs recovery, tackling inequality and supporting public services.

The STUC campaign will call for commitments to restore the pay of public service workers and for the use of all available levers to push up pay in the private sector.

It will call on candidates to support a plan for good jobs with a focus on younger workers and a step-change in government investment to create green jobs.

It will also call for urgent action on the back of the Feely Review to remove the profit motive, tackle a flawed model of procurement, and end low pay through sectoral bargaining in the Care Sector.

The STUC was due to host a trade union hustings for leaders and senior party representatives yesterday, but this was postponed following the death of the Duke of Edinburgh. It is hoped that the event can be rescheduled.

Later this month it will release “COVID winners and losers” research and a series of papers outlining the potential for jobs creation in the green economy with a proper industrial strategy.

STUC leader, General Secretary Rozanne Foyer said: “If we need a super majority for anything in this next parliament it should be for a radical plan to increase pay, create good jobs and for a Scottish National Care Service of which we can be proud.

“The STUC will challenge candidates of all parties to commit to a ‘People’s Recovery’, rebuilding a better economy and shifting power in favour of working-class people from day one of the new Parliament.

“That challenge will be carried directly to candidates by raising the voices of workers who have become all too used to being dictated to, rather than listened to, by the politicians.

“Whilst many companies have suffered during the pandemic, many others have profited greatly. Workers have borne the brunt of the suffering and very few of the profits.

“Over the past year more than half of people in the top income quintile continued to be paid in full, but this was only true for 28% of those in the lowest income quintile. We need urgent action to address this.”

UK Government hits vaccination target ahead of schedule

All adults over 50, the clinically vulnerable and health and social care workers have now been offered a life-saving Covid-19 jab, as the UK Government prepares to move into the next phase of the Covid-19 vaccination programme.

The target was reached ahead of schedule, with the government having pledged to offer a first dose to priority cohorts 1-9 by 15 April.

Nearly 40 million vaccines have now been given in total, with adults under 50 expected to begin to be invited in the coming days.

Prime Minister Boris Johnson said: “We have now passed another hugely significant milestone in our vaccine programme by offering jabs to everyone in the nine highest risk groups.

“That means more than 32 million people have been given the precious protection vaccines provide against Covid-19.

“I want to thank everyone involved in the vaccine rollout which has already saved many thousands of lives.

We will now move forward with completing essential second doses and making progress towards our target of offering all adults a vaccine by the end of July.”

The JCVI are expected to publish their final advice on how the government should vaccinate those aged under 50. This advice will pave the way for the next phase of the vaccination programme, which is expected to begin this week.

NHS organisations in the four nations, in collaboration with devolved administrations, will decide how to operationalise that JCVI advice.

It is thought that people in England in their late 40s will be the first to be invited to book their jabs.

Over 7 million second doses have now been given – with a record 475,230 given on Saturday – and we remain on track to offer a first vaccine to all adults by 31 July.

More freedom from Friday!

“Covid is in retreat in Scotland” – FM Nicola Sturgeon

Statement given by the First Minister Nicola Sturgeon at St Andrew’s House today (Tuesday 13 April 2021):

“Lastly, I want to set out, as I indicated earlier, a change to our existing plans.

We have always said we will keep plans under review and accelerate the lifting of restrictions if possible.

Indeed, we are legally obliged not to keep any restrictions in place for longer than they are needed.

Now, it’s important to stress that the improved data, and I’m sure the CMO will underline this, does not allow us to throw caution to the wind – certainly not if we are sensible – but it does give us a bit of limited headroom.

So we have considered whether we can bring forward any changes that will particularly boost mental health and wellbeing. So we focused really on trying as far as possible to give families more opportunities to get together earlier than was planned. 

In particular, we have looked at travel within Scotland to see friends and family, albeit outdoors.

At the moment, we cannot leave our own local authority areas except for an essential purpose.

That rule was due to remain in place until the 26 April.

But the data allows us to make a change to this earlier than that.

So, from Friday this week – 16 April – we will all be able to travel anywhere within Scotland for the purposes of outdoor socialising, recreation, or informal exercise. We are also able to relax the rules for meeting people outdoors, again from Friday.

At the moment, a maximum of four adults from two households are permitted to meet outdoors.

From Friday onwards, that will change to a maximum of six adults, from up to six households. So that’s quite a significant relaxation of that outdoor meeting limit.

So in summary from the end of this week, you will be able to meet up with family and friends who live in different parts of the country. Many of those reunions will be long-awaited, and much anticipated. 

But please do remember that meetings at this stage, probably until the middle of May, meetings must still be outdoors – not inside our own homes.

And I would aske everyone to please be careful and remember that due to physical distancing, public transport capacity remains relatively limited.

And remember also that travel restrictions for wider purposes – such as leisure, shopping, visiting hospitality premises or staying in tourist accommodation – will remain until 26 April when these places will re-open and all travel restrictions within Scotland will be lifted.

I can also confirm today that we do expect to lift restrictions on travel to and from England and Wales on 26 April – something which I know will be welcomed by many, and perhaps in particular by businesses in our tourism sector.

Now it may still be necessary in future to have temporary travel restrictions to and from places with high rates of Covid.

We will be very serious about mitigating any risk of importing the virus, and particularly new variants of the virus, into Scotland, so we may see some limited travel restrictions in future either within Scotland or between Scotland and other parts of the UK.

But from 26 April, we intend that people in Scotland will be able to travel anywhere across Britain.

Northern Ireland is due to review its restrictions later this week – so we will review our approach to travel there before 26 April and we hope that that can be freed up to.

And travel restrictions to and from other parts of the common travel area – including the Republic of Ireland, the Isle of Man and the Channel Islands – will also be kept under review.

We also hope to be able to agree rules for international travel on a four nations basis.

I should stress however, and I know this is difficult, that international travel does remain a significant risk – particularly given the acceleration of spread that we are seeing in many other parts of the world and given the possibility and reality of new variants of the virus being imported into Scotland.

It may be the case that we have to endure restrictions on international travel for a bit longer, as the price we pay for much greater normality here in Scotland. 

I know that’s not easy and often when we talk about international travel we talk about holidays, but I’m very well aware that for many people international travel is about seeing families, so we will not keep these restriction in place for any longer than necessary, but it is important right now to protect our progress here so we don’t make the mistakes we perhaps made as we came out of lookdown last time and open up international travel too quickly and then compromise and jeopardise the progress that we have made. 

However, back to the positive, from Friday  – we will be able to travel more freely within Scotland, and to meet up in larger groups outside.

A week later, on 26 April, the retail and hospitality sectors will reopen.

And then, as the summer progresses, we do expect to see a return to much greater normality.

All of that is positive news. It’s a testament to the success of the vaccination programme, and more importantly it’s down to the sacrifices all of us have made up until now.

I know how tough that has been and how tough it still is, but it is those sacrifices that now make possible the easing of restrictions that lie ahead of us.

But the final point I need to make really relates to that one. It is the truth and the continuing reality that the best way to keep on making progress out of lockdown, is to continue to keep cases low.

Covid is in retreat in Scotland, no doubt about that, but it hasn’t gone away and it won’t simply magically go away. It will come back if we allow it to come back. 

So we must still exercise care and caution because we want our progress this time, even if it as not as fast as we want it to be, to be firmly in one direction. 

That means continuing to stick to the rules that are in place.

In particular, for now, please don’t meet up with other households in your or their homes. We hope that can be eased from the middle of May.

Continue to work from home if you can for now.

And on any occasion when you do leave the house, and this becomes more important as we start to ease restrictions, remember all of the basis rules:

  • wear face coverings;
  • avoid places that are busy; so this weekend if you decide to travel a bit further to see a group of friends or family, if you go to somewhere that’s crowded, come away and go somewhere else.
  • remember to clean hands;
  • use two metre distancing
  • and self-isolate and get a test if you have symptoms.

As i said, these precautions become more important as we open up.

One final point I just want to clarify, which I should have said earlier on the move to six people from six households outdoors, is that of course doesn’t include children under 12. They don’t count towards that limit. 

If we all continue to do the right thing, do the sensible thing, enjoy responsibly these easing of restrictions, then there is every reason for us now to be really optimistic that we are on the right track.

So let me end by thanking you again for everything you have done to make all of that possible.

Council Leaders have welcomed the Scottish Government’s latest COVID-19 update, and the easing of some restrictions earlier than expected. 

 Council Leader Adam McVey said: “I know people across the city will be extremely pleased with the First Minister’s latest COVID update, as am I. So many residents will now be able to visit loved ones in other parts of the country, who they may not have seen for many months, or to gather with more friends and families outdoors, which I know will have such a positive impact on everyone’s wellbeing. 
 
“We’ve all worked so hard over the winter to stick to restrictions, and I know many businesses have had to make real sacrifices to help limit the spread of this virus, so once again I want to thank everyone for their efforts to protect one another during this most challenging of years.
 
“Of course, with infection rates dropping and an ongoing rapid roll-out of vaccinations, there is much to be hopeful about as we stay on-track in our recovery from the pandemic.

“But, while some of our freedoms are gradually being returned, there’s no room for complacency. There are still rules in place, for good reason, and we must continue to observe these with care if we are to return to the normality that we’ve missed so much, sooner rather than later. 

Depute Leader Cammy Day said: Today’s news is to be welcomed and recognises the real need for us to be able to spend more time with family and friends, something I know we have all felt the lack of over recent months.

“Lifting of travel restrictions from England and Wales later this month is also a really positive step for all those missing relatives and friends around the country and will be a huge benefit to all the hospitality businesses and accommodation providers who are looking forward to welcoming visitors back.
 
“Now, we need to set our sights on recovering safely and sustainably. Though the latest update gives us reason to be optimistic, and will allow us to enjoy spring with one another, we still need to work together to get through this.

“By following the guidance in place around physical distancing, meeting outdoors and continuing good hygiene – as well as looking after our parks and outdoor spaces when we do gather – we can emerge from this healthy and happy.”

The Scottish Government is following a timetable for easing restrictions – indicative dates and further information can be found on their website.

Find out more about Council services and support on offer during the COVID-19 pandemic online.   

ELREC April events

14/04 – The Divine Light In Us workshop

The discussion will focus on helping us see our true selves.

When you take away the body and the mind that comes with it, you are left with the soul which is pure energy. That energy glows like a shining light within ourselves.

During the ups and downs of living a life with constant distractions at our doorsteps, we disconnect ourselves from our true nature which is full of love, compassion, positivity, honesty, kindness, euphoria, and peace.

We need to take time out daily to connect to that self of ours where we can find ‘home’ and find the peace we all long for in our lives.

Join us by clicking on the link below on Wednesday 14th, April 2021, at 5.30pm:

Topic: The light in us
Time: Apr 14, 2021 05:30pm

Join Zoom Meeting
https://zoom.us/j/8032158539?pwd=aFdmZkkzQTVkY0N2M0dYem5JbHRtdz09

Meeting ID: 803 215 8539
Passcode: 12345

28/04 – ELREC Annual General Meeting 

We would like to invite you to attend ELREC’s AGM which will be held on Zoom.

Wednesday 28th April 2021, 6:00 – 7:00pm.

Join us to hear reports of another year of achievement for ELREC.

We look forward to seeing you at the meeting.

Get your ticket by clicking here.

Treatment for Duchenne Muscular Dystrophy accepted by Scottish Medicines Consortium

·       A drug called Translarna can help treat an underlying genetic cause of Duchenne muscular dystrophy

·       Muscular Dystrophy UK, Action Duchenne, Duchenne Family Support Group, and Duchenne UK appeared before the Scottish Medicines Consortium in March

·       The Scottish Medicines Consortium has accepted the drug for use on NHSScotland over the next three years

·       The drug company must now submit a plan to Scottish Government before it can be given on NHS Scotland

A DRUG that can treat an underlying genetic cause of a muscle-wasting condition has been accepted for use on NHSScotland, it has been announced.

This will pave the way for the drug to be made available across the next three years, through a system called the ‘ultra-orphan pathway’.

The news comes after Muscular Dystrophy UK, Action Duchenne, Duchenne Family Support Group and Duchenne UK appeared before the Scottish Medicines Consortium (SMC) last month, following an earlier joint submission to accept Translarna for use on NHSScotland.

The drug can help treat patients with an underlying genetic cause of Duchenne muscular dystrophy (DMD), called nonsense mutations. This condition primarily affects boys and causes muscles to weaken and waste over time, with most of those affected needing to use a wheelchair by the age of 12. The life-limiting disease also causes other severe health problems to the heart and breathing muscles.

In yesterday’s announcement, the SMC said it accepts that Translarna meets the definition of what is known an ultra-orphan medicine, used to treat extremely rare conditions.

It means that eligible DMD patients aged two or over and who are able to walk should be able to have the treatment on NHSScotland under the ultra-orphan pathway for at least the next three years. This is provided that the company manufacturing Translarna submits a data collection plan to the Scottish Government.

The plan should outline how further data, including evidence outlining the experiences of patients and carers, will be collected over the next three years. At the end of this period, the drug company should provide the SMC with an updated submission for reassessment. The SMC will then review the evidence before deciding if Translarna can be routinely used on NHSScotland.

In the announcement, the SMC acknowledged that Translarna “may allow affected children to retain the ability to walk for longer, potentially leading to increased independence”.

More information can be read here.

Provided that the drug company has submitted its plans to the Scottish Government, Translarna will be given in addition to the current standard treatments on NHSScotland.

Families and individuals should speak with their clinician to find out more about eligibility. More information will be shared with relevant patient groups accordingly.

A spokesperson on behalf of the four charities said: “Muscular Dystrophy UK, Action Duchenne, Duchenne Family Support Group and Duchenne UK are delighted the SMC has accepted Translarna for use on the ultra-orphan pathway for the next three years.

“Today’s announcement is excellent progress in our bid to help those with Duchenne muscular dystrophy access appropriate treatment in Scotland, especially because every day is a race against time to slow down the condition.

“We believe that the physical and mental health benefits of Translarna have the potential to improve lives for so many families living with Duchenne. The four charities are therefore very much looking forward to hearing the drug company’s plans going forwards, so that patients can start to access treatment as quickly as possible.”

Charity fundraiser to complete Kiltwalk challenge to help keep children safe from abuse

An NSPCC Scotland fundraiser from East Lothian, will walk thirteen miles, play tennis for nine hours and walk her dog for six miles over three days (16 – 18 April) to help protect children from harm.

Linda Hamilton, from Port Seton, has worked as a community fundraising manager for NSPCC Scotland for four years and will take on the three-day challenge as part of this year’s virtual Kiltwalk. The money raised will be topped up by 50% by the Hunter Foundation, organisers of the annual event.

Linda Hamilton, community fundraising manager for NSPCC Scotland, said: “This last year has been tough for all of us, and children have been the hidden victims of the pandemic.

“With schools closed for lots of the last year, children have been cut off from their friends and support networks, with many young people feeling alone and isolated, and some, sadly, having to deal with bereavement.”

The NSPCC supports children and young people around the country by providing its Childline service, which children can contact to speak to a trained counsellor about anything they are worried about.

The charity also has a service centre in Govan, Glasgow, which provides community outreach and therapeutic services to local families, helping them to provide the best support to their children.

Linda added: “It has also been a challenging year for fundraising, as most events were postponed, cancelled or held virtually. But that’s not stopped our amazing supporters from coming up with innovative ways of raising funds. 

“After last year’s Kiltwalk was cancelled, one of our Childline volunteers, Siobhain, took it upon herself to walk a full marathon in her back garden, taking her more than eight hours, raising £1,000.

“We’ve also had people host virtual quizzes and bingo games, as well as ‘celebrate and donate’ in which supporters have simply set up a Just Giving page and asked their friends and family to make a donation instead of buying them a gift for their birthday or other celebration.

“I signed up for my three-day Kiltwalk challenge because I know how important the work of the NSPCC is, and the real difference it can make in children and young people’s lives.”

Linda will complete the challenge around Port Seton, and the ‘tennisathon’ will take place at her local club of eight years, Longniddry Tennis Club.

Linda said: “We can only continue to be there to support children and young people with the help of the general public, and if anyone would like to fundraise for the NSPCC, please do get in touch with me at linda.hamilton@nspcc.org.uk”

To sign up for this year’s virtual Kiltwalk, and raise money for NSPCC Scotland, search ‘virtual kiltwalk’, and to sponsor Linda in her challenge visit: https://bit.ly/3mvhfsY

Any adult concerned about the welfare of a child or young person can call the NSPCC helpline for free on 0808 800 5000. Children can call Childline at any time on 0800 1111.