I was honoured to be elected a vice-chair at the AGM of the All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed Diseases. I am a vice-chair for the APPG for PKU, a rare disease which does not allow sufferers to digest protein. The APPG for PKU and the National Society for PKU (NSPKU) has campaigned for over 7 years for NICE to approve, and make available medical treatment for PKU. At the end of 2021, NHS England announced that Kuvan would be available for patients of all ages. In 2022, NHS Wales announced a similar policy. The Rare Diseases APPG discussed its plans for 2023, which includes the coordination of care and access to medicines for rare conditions, and monitoring of the implementation of Rare Disease Action Plans in each of the UK nations. After the AGM was completed, we heard from speakers who have been involved in Rare Diseases. Nick Meade, Genetic Alliance UK, gave us an update on the implementation of the Rare Diseases Frameworks. Tony Thornburn, Behcets UK, (Behcets is an inflammatory disorder that affects multiple parts of the body) who spoke about patient registries for rare conditions, and highlighted that there are 114 registries which need collating. Tony believes that true collegiate working in the medical arena is vital, but this doesn’t happen, as shown by his frustration at trying to establish a patient Registry for Behcets.
Professor Adrian Williams, University Hospital Birmingham NHS Foundation Trust spoke about optimum clinical pathways for adults with neurological conditions and the value of care pathways. Alice Fabre, Spinal Muscular Atrophy (SMA) Newborn Screening Alliance, spoke about its mission to achieve the earliest possible introduction of newborn screening for SMA in the UK, which will deliver the best outcomes from treatment and reduce future healthcare costs. Every 5 days in the UK a baby is born with SMA, which is a devastating genetic condition. Without treatment it is a leading cause of infant death. Earlier treatment before onset of symptoms is critical and newborn screening is the fastest route to a diagnosis of SMA.
At the APPG for Flooding we heard from Tracey Garrett, CEO of the National Flood Forum NFF, which supports flooded people and communities through its website, helpline available around the clock during flood episodes, and recovery work in communities where people are putting their lives back together. The NFF longer term work is helping flood action groups in communities to work with flood risk management agencies to create solutions and plans to mitigate flood risk. The economic impact of flooding is estimated at £1.3bn a year. The national risk register places flooding second to pandemics or biological attacks. The Environment Agency (EA) found that 5.2m properties are at risk of flooding in the UK. Rural communities and smaller areas within large urban conurbations are particularly hit by repeated flooding. Each flooding episode has financial, physical, and emotional impacts, which are compounded after multiple floodings. Many areas do not meet the Flood Defence Grant in Aid (FDGiA) criteria and are therefore unlikely to be considered for capital schemes. FDGiA is the UK Government fund for managing flood risk and provides funding for EA management studies, and local authority flood risk and coastal erosion management studies and projects. Natural Resources Wales is responsible for administering this in Wales. Communities that have flooded cannot access this funding directly, but have to apply to a Risk Management Authority to lead a bid on their behalf, which is difficult, time consuming and Lead Local Funding Authorities do not have the resources, so many funding bids are prioritised, and many communities miss out. In 2022, the UK Government announced a package of £100m to be used for 80 schemes for frequently flooded people, but the details have not yet been released. Heather Shepherd, Head of Engagement at NFF, spoke about the trauma, anxiety, and physical exhaustion of flooding; managing jobs, family, insurance claims, finding alternative accommodation, packing up the house contents; children’s education; disability and current illness; impact on extended family and friends; recovering a normal lifestyle; and the resilience needed to cope with repeated flooding. The NFF would like Parliamentarians to challenge the FDGiA criteria; support the need for more funding and research into the human aspects of repeated flooding; and promote local schemes that don’t match the business case for FDGiA to highlight the need for reform.
As vice-chair of the APPG on the Environment, I attended a roundtable discussion with environmental experts – Jean Blaylock, Global Justice Now; Amandine Van de Berghe, Client Earth; Ben Westerman, Aldersgate Group; and Jonny Peters, E3G – to discuss the Energy Charter Treaty (ECT), and the UK’s relationship with it, which will be decided at a summit in April. The ECT is an investment agreement between 50 countries dating back to 1990, specifically for the energy sector. At that time the focus was on access to gas and oil reserves in former Soviet countries where levels of climate ambition was not high. The purpose of the ECT is to protect foreign investments from regulatory or political interference, but the Treaty includes arbitration panels capable of awarding multimillion dollar compensation through Investor State Dispute Settlements (ISDS). An ISDS is used by fossil fuel companies to sue governments for policies which protect the climate and environment. In 2018, a negotiation to remodel the ECT was launched with the objective to align with the Paris Agreement and to achieve a consensus on the main principles by 24th June 2022. But despite attempts to reform, the ECT continues to undermine global climate action and several countries have announced their intention to withdraw from the ECT. Italy has left, and France, Germany, Luxembourg, Spain, Poland, the Netherlands have said they intend to leave. This month, a group of experts wrote to the U.K. Government’s Energy and Net Zero Secretary urging the UK to leave the ECT. There was agreement between the experts that the ECT is holding back investment in green energy, is costly, and a risk to governments who want to implement green policies. Because several governments have been sued for millions under the treaty, there is a “chilling effect” of the fear of being sued, and this is allowing fossil fuel operations to continue. The UK Government is sitting on a fence – modernisation is not its high priority. Modernisation requires three quarters of the countries in the ECT to ratify change, and there have been no arbitration cases against countries who have left the treaty. The UK needs to leave now so that it can lead on shaping the future legal issues on how to withdraw. The EU supports withdrawal and if the UK doesn’t act now, it will not be included as part of these plans.
At the AGM of the APPG on Archives and History, I was pleased to be re-elected as a vice-chair. We have some exciting events planned for 2023, including a roundtable of famous US commentators speaking about the 60th anniversary of the assassination of JFK – who was murdered on 22nd November 1963 in Dallas Texas.
There were two “State of the UK Rescue” events organised by the All Party Parliamentary Advisory Welfare Group, of which I am a vice-chair. At the drop-in event, we met some of the rescue dogs, and learned about the factors affecting rescue organisations and shelters during the cost-of-living crisis. I met my old friend Vanessa Walden, who runs Hope Rescue in Llanharan. We have worked together campaigning to ban greyhound racing in the UK. Vanessa secured a petition to ban greyhound racing in Wales which was supported by the Senedd Petitions Committee and Welsh Government Minister Lesley Griffiths. The committee’s recommendations to ban greyhound racing will be debated in the Senedd on 8th March. I had my photo taken with a little rescue dog called Charlie. I also attended the “State of the U.K. Rescue” open discussion event with speakers from across the world of dog welfare. The event was so well supported that there wasn’t a seat left in the largest committee room in Westminster, and the discussion lasted for over three hours.
“Wales Week London” was founded in 2016 by Dan Langford OBE, and it now lasts way before and way beyond its original week organised around St David’s Day. This year it extends from 19th February to 5th March. I am honoured to be the chair of the APPG for Wales in the World, and we held a meeting to coincide with Wales Week London. The theme of the meeting was “Welsh Export Champions” an initiative created by the Department of International Trade (DIT) Wales to discover and recruit businesses in Wales who are prepared to promote the benefits of exporting and to encourage other companies to consider selling to overseas markets. Export Champions are able to share their experiences with businesses who are considering venturing into the export market. Tom Taylor, Deputy Director for DIT Wales, provided information on the vast range of support it offers to Welsh businesses and explained free trade agreements and intergovernmental working. We heard from two Export Champions, followed by a presentation and whisky tasting session from Stephen Davies, Managing Director of Penderyn Welsh Whisky, which I listened to but did not partake in having been a teetotaller for over 45 years. However, the other members of the APPG appeared to approve of the selection of Penderyn whisky that Stephen had brought with him.
As a vice-chair of the APPG on UK Shared Prosperity Fund (UKSPF), I attended a closed meeting with the Minister for Levelling Up, Dehenna Davison MP, to discuss the review of the first tranche of the UKSPF and what comes next. Many Welsh Labour MPs expressed their concern that the Welsh Government has been removed from running the fund, and that the replacement competitive bids made by local authorities were full of complicated paperwork; there was little time allocated to put together a bid using the mandatory complex UK Government criteria; and the funding window was three years as opposed to seven years (with a possible three year extension) for the previous EU Funding Scheme, so sustainability of the UKSPF is a serious concern.
As a vice-chair for the APPG for Steel, which is chaired by Stephen Kinnock MP, I attended a meeting to learn about proposals for the Carbon Border Adjustment Mechanism (CBAM) in the UK. Gareth Stace, Director of UK Steel, delivered an excellent briefing. Steel is a global commodity intensively traded across borders. While 25% is traded internationally, this climbs to 43% outside China. The UK exports 45% of steel production and imports 60% of steel direct requirements. Mechanisms such as emissions trading and carbon pricing taxing domestic producer’s emissions create an uneven playing field when countries exporting to the UK have not faced comparable policies. Therefore, decarbonising steel production, passing on the additional cost of decarbonisation to steel customers, means UK producers are being outcompeted by high-carbon emission steel imported from abroad. CBAM is needed to level out Domestic and International producers. It would impose a carbon tariff equivalent to domestic carbon prices so that domestic and international producers face similar carbon costs. The EU has agreed to introduce a CBAM policy, initially implementing reporting requirements from October 2023 before the CBAM tariff applies from 2026 onwards. Free allowances will be gradually phased out towards 2034, and EU producers will then face the full carbon price. When exporting steel to the EU, non EU steel makers will buy a CBAM certificate corresponding to the amount of emissions generated in the production of their goods, which is priced according to the average weekly price of UK Emission Trading Scheme (ETS) auctions. The UK’s carbon prices have increased to historical highs costing the steel industry an estimated £125m in compliance costs for 2022. Carbon costs are curtailing steel production and undermining competitiveness of UK steel production, and eating into capital investment for decarbonisation. The impact of the EU CBAM could be substantial, and where will the steel currently being exported to the EU go if faced with a tariff. Will it be diverted to the UK, flood the British market and depress prices. Whilst UK producers may initially be exempt, once EU free allowances are reduced, EU and UK producers will face different effective carbon prices, and UK producers will have to buy CBAM certificates resulting in a trade barrier to our biggest export market. And it is not known how CBAM will operate in Northern Ireland. HM Treasury has announced that it intends to consult on carbon leak measures in Spring 2023, including CBAM and product standards. But its implementation would be after the EU CBAM is operational, leaving the UK steel industry exposed.