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AM welcomes rare disease victory

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disease victoryREBECCA EVANS AM, Assembly Member for Mid and West Wales, has welcomed the launch of the UK’s first strategy to help build understanding of rare diseases and boost research to find and deliver more effective treatment, support and therapies – and hailed the promise of a Wales delivery plan as a victory for rare disease campaigners in Wales.

In 2009, a Council of the European Union recommendation on action in the field of rare diseases was adopted unanimously by all Member States of the European Union, including the UK – representing a major milestone in the field of rare diseases.

The move finally recognised that rare diseases are a health priority, and acknowledged that cooperation and coordination across Member States in rare diseases was not only logical and meaningful in terms of using available resources in the best way, but would also have an enormous impact on quality of life and survival for millions of people all over Europe.

Key to the EU recommendation was that each Member State should have a plan or strategy in place by the end of 2013 to facilitate research and to improve access to care, treatment and support for patients affected by rare diseases.

Mrs Evans, who has long championed rare diseases in the National Assembly for Wales, said:

“This is excellent news for people affected by rare diseases.

“Rare diseases are not rare. There are over 6,000 known rare diseases, and a rare disease is defined as any condition affecting fewer than 5 in 10,000 of the general population.

“Rare diseases will affect 1 in 17 people at some point in their lives that’s 175,000 people in Wales.

“People affected by rare diseases can face common problems including access to a timely diagnosis, misdiagnosis, lack of access to information, poor coordination of care, problematic transition from children’s to adult services, poor access to treatment, lack of research, and inequality of provision.”

Key elements of the UK strategy include:

• A clear personal care plan for every patient that brings together health and care services, with more support for them and their families

• Support for specialised clinical centres to offer the best care and support

• Better education and training for health and social care professionals to help ensure earlier diagnosis and access to treatment

• Promoting the UK as a world leader in research and development to improve the understanding and treatment of rare diseases

Mrs Evans is a member of the Assembly’s Health and Social Care Committee and Co-Chair of the Cross Party Group on Disability. She has previously tabled and led a debate on rare diseases at the Senedd.

During the debate, Mrs Evans highlighted the different directions being taken by the Welsh and English health services and argued that it was essential that the rare disease plan delivers for people living with rare conditions and their families in Wales.

She used the debate to call on the Welsh Government to commit to ensuring the development and implementation of a Wales-specific plan for rare diseases in Wales to provide the framework for delivery of a UK strategy.

During the debate, Mrs Evans said that a “commitment to a delivery plan would represent the single most significant step since devolution towards improving support and outcomes for people with rare diseases in Wales. If the Minister takes away only one thing from this debate, I hope it would be that.”

Today, Mrs Evans said: “I am delighted that the Welsh Government has listened to my call. The Health Minister, Mark Drakeford, has just announced that the Welsh Government is working with the NHS and the voluntary sector to develop a specific Wales implementation plan. I look forward to it being delivered early next year.”

Alastair Kent OBE, Chair of Rare Disease UK, which was part of the stakeholder forum that helped shaped the strategy, said:

“Patients and families affected by life limiting rare diseases have often struggled to get a diagnosis and to access services that meet their needs. While the NHS has demonstrated that it is capable of delivering a world class service, the experience of patients has been that this is by no means a universal experience.

“With the development of the UK Strategy for Rare Diseases patients and families can have a clear expectation of what to expect from the NHS, wherever they live in the UK. For the first time the four nations of the UK have come together to recognise and respond to the needs of rare disease patients systematically, structurally and in accordance with the founding principle of the NHS that treatment should be a response to need.

“Turning the UK Strategy’s aims into practical benefits for patients will require hard work and detailed planning. Now, at least, patients can have a clear expectation of what the NHS aspires to provide for them, wherever they live in the UK. This is a huge step forward, and the publication of the Strategy will give hope and comfort to the 3.5 million people affected by rare diseases across the UK.

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Business

Steelworkers’ Union presses Tata to adopt expert plan ahead of talks

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THE Steelworkers’ union, Community, is pressing Tata Steel UK to scrap its bad deal for steel and commit to the alternative Multi-Union Plan ahead of crucial talks with the company this week.

The call follows a meeting between steel unions and Tata officials last week, and the publication of a new report from industry experts Syndex which slams Tata’s approach for pursuing ‘what’s cheap’ over ‘what’s best’. The report highlights that the company’s current proposal – which would cut around 2,800 jobs in South Wales by moving production at Port Talbot to a single 3mt Electric Arc Furnace – comes with significant risks, and would make Tata Steel UK an outlier in Europe.

In contrast, Syndex describes the Multi-Union Plan as “the only solution offering to maintain all the volume currently produced by Tata Steel UK” providing “a future for all the company’s assets and a roadmap for a just transition under the constraint of the financial hurdles and the reality of market dynamics for the UK steel industry.”

Community General Secretary Roy Rickhuss said: “During our meeting with Tata last week, members of the National Trade Union Steel Coordinating Committee provided our final conclusions on the company’s restructuring proposals: namely that the company’s plan is reckless; that it weakens national security by removing Britain’s primary steelmaking capacity; and that it would have devastating consequences for steel communities in South Wales and beyond.

“Our Multi-Union Plan is a credible alternative to Tata’s destructive scheme. It would safeguard the future of Port Talbot steelmaking, protect all the downstream plants, save thousands of jobs and can be delivered with no compulsory redundancies.

“It is not too late for Tata to do the right thing and adopt the Multi-Union Plan – and we hope that they will take this step. However, should the company choose to reject it, we will fight them every step of the way. To enable us to do this, we will need the strongest possible mandate from our ongoing industrial action ballot. For that reason, I am urging all our members to vote ‘YES’ and ‘YES’ and return their ballot papers at the earliest opportunity.”

Community’s Assistant General Secretary Alasdair McDiarmid said: “Syndex’s new report demonstrates clearly that our Multi-Union Plan is viable and sustainable, whilst Tata’s proposals are reckless and harmful. The company must change course, and the UK Government need to step up too. Our alternative plan would require additional investment from the government – taking total public support for the decarbonisation of Port Talbot to £950m overall – but this is still significantly less than the support packages other governments are providing to green their steel industries. It’s also in line with the £3bn Green Steel Fund the Labour Party has guaranteed to deliver in the next parliament.

“We are at a critical moment, and the choices that Tata and the government make now will reverberate for generations to come. The fundamental question here is whether we want to be a country that makes its own steel, or a country that imports it – as would be inevitable under Tata’s damaging proposal. With the spectre of a CBAM exemption for India hanging over free trade talks, we risk under current plans becoming little more than a simple processor for imported Indian Steel. We can’t allow our industry to be sacrificed on the altar of Rishi Sunak’s search for a legacy.

“With so much at stake, we are urging our members to vote ‘YES and ‘YES’ in our industrial action ballot to enable us to fight to maintain blast furnace steelmaking into the 2030s and to prevent compulsory redundancies.”

Leading South Wales steel MPs have also thrown their support behind Community and the GMB’s Multi-Union Plan.

Stephen Kinnock, MP for Aberavon, said: “As industry experts at Syndex have laid out this week, the Multi-Union Plan is a detailed, serious, robust and compelling proposal for the future of the Port Talbot steelworks and it has my full and unequivocal support. It’s the only realistic route to retaining our customer base, and it’s also the only credible pathway to a strong, competitive and profitable future for steel-making in Port Talbot and throughout the downstream plants across Wales and the UK. By contrast Tata’s shortsighted and counter-productive plan will mean exporting jobs from Port Talbot to India, a country where steel plants have a far higher carbon footprint.

“It’s vital that steel is at the heart of a forward-looking industrial strategy, which is why Labour has pledged £3billion to support the industry over the next decade.”

Jessica Morden, MP for Newport East which includes Llanwern Steelworks, said: “Tata and Rishi Sunak’s bad deal for steel would represent a huge blow to our steel industry and steel communities like our own in Newport. The deal would also leave the UK country dependent on imported steel from heavy-polluting countries at a time of global uncertainty.

“It doesn’t have to be this way, and the Multi-Union Plan for steel which Community and GMB have put forward represents a viable alternative to protect jobs and preserve steelmaking capacity here in South Wales. I urge Tata to think again and change course from their damaging proposals.”

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Business

Workplace volunteering could boost productivity and unlock billions

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EXPANDING workplace volunteering opportunities to cover all employees in the UK could generate billions in economic gains (£1.2 billion – £3.6 billion per year in wellbeing benefits to individuals, £1.6 billion – £2.8 billion per year in improved net productivity)
Ensuring all employees have access to volunteering opportunities could save between 1.4 million and 2.5 million working days of sickness absence.

Workplace volunteering has the potential to boost productivity, improve employees’ wellbeing, and generate billions for the UK economy, according to a new report by Pro Bono Economics (PBE).1

The report – ‘Triple dividend: How workplace volunteering can make us happier, healthier and more productive’ – which has been produced for business volunteering charity Pilotlight, found that net productivity gains of between £1.6 billion – £2.8 billion could be unlocked for the UK economy by expanding workplace volunteering opportunities.2

PBE’s analysis revealed that 17 – 23 million employees currently do not have access to workplace volunteering, and so are missing out on the health benefits of volunteering and the opportunities to learn new skills. By expanding workplace volunteering opportunities to cover all employees in the UK, the current untapped potential could generate £1.2 billion – £3.6 billion in wellbeing benefits per year to the individuals themselves.

It could also reduce levels of absenteeism, with research showing that participation in a workplace volunteering scheme provides an average reduction in absence of around 0.9 days per year for each member of staff volunteering.3 The number of days that employees have taken off work due to illness has risen sharply since the pandemic, with 186 million lost alone in 2022, an increase of more than a third over the 2019 level. The total cost of sickness absence to UK employers was around £24 billion – roughly equivalent to the GDP generated by Newcastle – or £6.4 billion higher than if absence rates stayed at the 2019 level.4

Turning to the productivity benefit overall, the PBE report points to studies which have suggested the productivity impact of workplace volunteering is sizeable, with high-skilled individuals who volunteer experiencing an estimated £2,300 boost to earnings. If the estimated productivity increase was applied to all the 1.4 – 2.5 million additional volunteers who participated from workplace volunteering to all employees, it could provide a gross productivity increase of between £2.2 billion and £3.9 billion.

Even after deducting the costs of lost time and administration fees for volunteering schemes, the productivity benefits could amount to net productivity gains of between £1.5 billion and £2.8 billion to the UK economy.5

There is a clear appetite from employees from the expansion of workplace volunteering. Analysis by NCVO suggests that between one quarter and a third of employees will take advantage of workplace volunteering when it’s available. This means that between 1.5 million and 2.8 million additional people might volunteer if workplace volunteering schemes were expanded across all employers.

While boost workplace volunteering would have some costs to the employer, the benefits more than outweigh those costs. For the employer, workplace volunteering schemes such as those run by Pilotlight which bring businesses and charities together could deliver between £1.50 and £3.60 of benefits for every £1 spent.

To make the most of the opportunity, research by the charity has suggested that employers should take steps to help employees around the options for volunteering. More than a third of employees surveyed (38%) said that an obstacle to volunteering is a lack of guidance from their employer. Of those currently involved in workplace volunteering, 79% believe that businesses themselves benefit from the practice.6

The benefits also have the potential to positively impact on communities, at a time when they are in need of extra support. Three in ten (30%) charities reporting increased rates of staff burnout as they struggle with the triple challenge of rising demand, difficulties recruiting volunteers and challenges with recruitment. This is particularly true of small charities, with almost six in ten (59%) reporting that recruiting volunteers is a major concern for them following a long-term decline in volunteer participation rates.8

Dr Jansev Jemal, Director of Research and Policy at Pro Bono Economics, said: “Increasing access to workplace volunteering opportunities has a triple dividend, as it could boost productivity and unlock billions in the UK economy, while providing much needed support for charities. In addition to wellbeing for employees, there’s a compelling, hard-nosed business case for considering workplace volunteering, including boosts to health and skills.

“As businesses take up this opportunity, there is a need to be realistic about the challenges for the charities themselves. Using volunteers effectively takes resources to manage, oversee and support those that are giving up their time. Businesses and other funders will need to consider how they can benefit by supporting the underlying costs of volunteering programmes, rather than assuming that an offer of time alone will suffice.”

Ed Mayo, Chief Executive of Pilotlight, said: “When it comes to business and charity, these results change everything – volunteering is not a cost, it is an investment. It is good for charity, good for the volunteer and good for the bottom line.

At the heart of this, in the partnerships we have designed with a range of leading businesses, is how employees develop their skills as they deploy them in a radically different setting. In future, it will not be the PR or corporate affairs department that leads on employee volunteering, but HR leaders who see it as an integral part of their toolkit for developing talent and skills.”

Jack Kidder, Responsible Business Manager at Henry Boot PLC, said: “At Henry Boot, we know that volunteering empowers our people to dedicate their time, skills, and passion for the benefit of our communities. This is not only impactful for charities, but also hugely beneficial for our business. Volunteering their time allows our people to connect with issues they care about in the communities in which we work and live. It creates a genuine sense of purpose and cohesion as our people come together to make a real difference for others – whether through inspiring learners, supporting communities, restoring habitats, or sharing knowledge. Volunteering enables our people to develop their skills and experience the positive wellbeing effects associated with helping others. This use of our time is helping shape our evolving culture as we celebrate being a long-term sustainable business that genuinely cares for the communities we work with, while we create exciting new places across the UK.”

Alexandra Berry, Head of Sustainability at the Strand Palace Hotel said: “Our team love to get involved in team-building hikes, red nose days, wellbeing walks, ‘Wear it Pink’ days, charity runs, bingo nights, themed quizzes, clothing donation drives, as well as offering our team a paid volunteering day each year. Feedback from our team has expressed these community events provide socialisation and relaxation outside of the hotel alongside contribution to a charitable cause, of which they are passionate about supporting.

“In 2023, the team raised over £3,000 through 8 local fundraising activities. What’s more, we have a regular commitment with The Connection at St Martins for our team members to volunteer to spend time with The Connection’s guests in their art room. With arts, crafts and chatting, the visits from the Strand Palace team help to build the guests’ confidence and social skills, providing a creative outlet away from the stress of being homeless.”

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Health

Pembrokeshire residents suffer severe health decline ‘due to landfill gases’

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A PEMBROKESHIRE couple, Mr Richard and Revd Patricia Rogers of Crud yr Awel, are experiencing severe health issues attributed to emissions from the Withyhedge Landfill, resulting in drastic lifestyle changes and severe symptoms.

Revd Rogers, who has managed asthma since childhood, reported a significant deterioration in her condition following exposure to landfill gases. Despite having controlled her asthma with minimal medication for years, she now requires intensive treatment including increased doses of Symbicort and Salbutamol Sulfate inhalers, alongside courses of steroids and antibiotics. Her symptoms have escalated to include extreme breathlessness, a hacking cough, frequent nosebleeds, continual headaches, and vertigo, culminating in a severe impact on her ability to perform daily tasks and care for her disabled daughter.

The couple’s health is closely monitored through their doctor’s surgery, and they attend the asthma clinic regularly. However, feeling powerless to directly change the situation, they have taken a stand by cancelling their council tax payments, a decision they plan to maintain until the landfill issue is resolved.

Revd Rogers has also prepared a letter to the Coroner, outlining the severity of her health issues as potentially life-threatening due to the landfill’s impact. This dramatic step underlines the gravity of their situation and their desperation for a resolution.

The Rogers’ story is not just a personal tragedy but a stark example of the broader environmental and health challenges faced by the community surrounding the Withyhedge Landfill.

They are calling for punitive measures against those responsible, including compensation for the financial impacts of their ordeal.

Their story has surfaced on the same day we reported that Natural Resources Wales is taking further enforcement action against the firm running the site.

NRW has issued site operators Resources Management UK Ltd (RML) with a further Regulation 36 Enforcement Notice which requires the operator to deliver a series of actions by specified deadlines to address ongoing smells from the landfill.

You can read more about the Enforcement Notice on the NRW website.

Outgoing Council Leader, Cllr David Simpson, said in a statement this week: “The smell from Withyhedge is having a major impact on residents and visitors. This situation has gone on too long and it is unacceptable.

“We now need to see RML act on the demands of the Notice and within the deadlines.

“The Council fully backs NRW’s stance that nothing is off the table in terms of further enforcement, including suspending the site’s environmental permit if appropriate, and we remain committed to working with NRW to ensure a long term solution to these issues.”

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