This week, we marked one year since the announcement of the first UK lockdown due to Covid. A minute’s silence was held in the House of Commons to mark the day and to remember all those who we have lost and those who have been left bereaved since the pandemic began. It was a chance to reflect on the struggles and challenges of the last year, but also to champion the heroes and scientific advances that have brought us through the worst parts of the pandemic. As a community, the people of Neath have come together to support and boost the morale of our NHS heroes in a way not seen before, and as the vaccination programme gives us hope for the future, we must ensure that this new sense of community spirit prevails beyond the pandemic. I lit my candle at 8pm to remember those who had died and to think of the families and friends across the country who are now mourning the loss of a loved one.
This week I’ve attended six All Party Parliamentary Groups.
The APPG on Access to Medical Cannabis under Prescription, chaired by Tonia Antoniazzi MP for Gower, discussed the current and urgent issues of access and funding to medical cannabis. The total, continuous block on attempts to gain funded NHS prescriptions continues to result in great hardship for families with children who are suffering from intractable epilepsy. The benefit of medical cannabis for children suffering from epilepsy is dramatic, some children have gone from being almost comatose, pumped full of powerful pharmaceutical drugs, still wracked by seizures to being almost seizure-free and living almost normal lives. But these families can no longer afford to pay thousands of pounds every month to access the only medicine that is keeping their children safe, and are now at breaking point over two years since medical cannabis was first legalised in the UK. Only three children with severe epilepsy are in receipt of NHS prescriptions, the remainder have to pay up to £2000 per month to secure private prescriptions. The APPG has written to the Prime Minister urging him to intervene in this ongoing crisis and, until it can be resolved, grant some form of compassionate funding to help these families, because time is rapidly running out and these children are at risk of not being able to receive the proven benefits from taking this life transforming medicine.
The APPG on Agroecology, chaired by Kerry McCarthy MP for Bristol East, Shadow Minister for Green Transport, held a climate meeting with Lord Goldsmith, Minister for the Pacific and Environment. The Minister provided us with an update on his work for COP26, which will be held in the UK in November, and how agroecology fits into the UK Government’s agenda ahead of and beyond COP26. He has been working on domestic, global and international environmental matters. The Minister also spoke about his work on the Environment Bill, which will not complete its passage through the House of Commons before the end of the current Parliamentary session, so will probably be carried over to the next Parliamentary Session which will begin after the Queen’s Speech which is expected in mid-May.
The APPG for Mutuals, chaired by Gareth Thomas, Labour and Co-operative MP for Harrow West, of which I am the treasurer, held its final evidence session into our enquiry regarding the demutualisation of Liverpool Victoria (LV) and its proposed sale to Bain Capital. We heard from Mark Hartigan, Chief Executive of LV and Matt Popoli, Global Head of Insurance at Bain Capital. The APPG are now in the process of compiling a draft report, which will include recommendations, and anticipate that the Final Report will be published in mid-April.
The APPG for Acquired Brain Injury, chaired by Chris Bryant MP for Rhondda, of which I am vice-chair, and whose secretariat is the charity UK Acquired Brain Injury Forum (UKABIF), held a meeting to discuss ABI in relation to sport. We heard from Nigel Huddleston, Minister for Sport, Tourism and Heritage, who was very supportive. Chris has been leading on ABI since forming the APPG. ABI may result in conditions such as cognitive decline, dementia, and shortened life expectancy. In 2018 our APPG produced the Time for Change report, but we are still waiting for UK Government action. Chris secured a Westminster Hall Debate in February 2020, to raise awareness of ABI in sport, veterans, and homeless people. He has met with Ministers – Jonny Mercer MP (Minister for Armed Forces and Veterans), Michael Gove MP (Minister for the Cabinet Officer) and Victoria Atkins MP (Minister for Safeguarding). Chris tabled amendments to the Domestic Violence Bill relating to the prevalence of undiagnosed ABI in women. Chris has said many times that the APPG and UKABIF will continue to “kick some chins” to ensure that a coordinated approach across government is achieved, so that people with an ABI get the care, opportunities and future they deserve.
The APPG for Hospitality and Tourism, of which I am a vice-chair, held its final evidence session for a green recovery – sustainable hospitality and tourism. With the UK hosting COP26 in November, the eyes of the world will be looking at UK industries and the efforts they are taking to reduce carbon emissions. We heard from Olivia Ruggles-Briese, Director of Greenview; Karina O’Gorman, Head of Corporate Responsibility IMG; Jonathan Webb, Senior Research Fellow IPPR North and Mark Chapman, CEO Zero Carbon Forum, about the challenges and opportunities that a green recovery may bring. Our report and recommendations will be published in mid-April.
As a member of the Parliamentary Panel of Chairs, I chaired three Westminster Hall Debates on Tuesday afternoon: Proposal for an Outer London Congestion Charge; The 550th Anniversary of the Battle of Barnet 1471; and Improving the Education System after the Covid-19 Outbreak. Whenever I have the privilege to chair Westminster Hall Debates, I am reminded of the broad diversity of topics that MPs bring to the attention of the House, on behalf of their constituents.
I was also fortunate to have the opportunity to speak in a Westminster Hall Debate this week, entitled Implementation of the Rare Diseases Framework, that was secured by Liz Twist MP for Bladen, who is the chair of the APPG for PKU, of which I am the vice-chair. I wasn’t aware of the rare metabolic disorder PKU until my constituents, who suffer with PKU, explained that having PKU prevents them from metabolising PHE which is an amino acid found in protein foods. The standard treatment is a very low PHE diet, removing almost all natural protein which is replaced with prescribed medical dietary proteins to ensure adequate nutrition. The PKU dietary regime is very complex, very restrictive, and very difficult to manage. Every meal, snack, and drink must be planned in advance, and people with PKU and their families spend an average 19 hours every week preparing their diet. If the diet is not strictly followed, a person suffering from PKU can experience isolation, brain fog, iron and vitamin deficiencies, and mental health issues. But the DWP has not accepted that the PKU diet is a “therapy”, so many people with PKU, including my constituents, have been denied the “daily living activities” component of the Personal Independence Payment (PIP) welfare benefit. I explained that a 2020 Tribunal Decision, which ruled that the PKU diet does qualify as a therapy, has given hope to claimants that future PKU PIP applications will be granted. I also paid tribute to the NSPKU charity set up in 1973, run by volunteers with personal experience of PKU, which is also the secretariat for our APPG. Together we have been campaigning since 2008 for the UK Government to prescribe the Biomarin drug Kuvan on the NHS, so that PKU sufferers can take Kuvan, and are then able to eat a normal diet and lead a normal life. The National Institute for Health and Care Excellence (NICE) has finally made its recommendations on Kuvan, and recommended that it will only be prescribed for children up to the age of 18. Whilst this is to be welcomed, because Kuvan has been available for the past 12 years, it will now create a cliff edge at 18, when teenagers are coping with enough changes to their lives, without being forced to revert back to the strict PKU dietary regime. The NICE recommendations went out for consultation after publishing its guidance on 25th February. The consultation closed on 18th March, and the PKU community has submitted evidence relating to the necessity for Kuvan to be available on NHS prescription for all PKU sufferers irrespective of age, and for further guidance regarding women with PKU who want to start a family. The APPG has also written to Meindert Boysen, Deputy Chief Executive of NICE, about its grave concerns: withdrawing Kuvan at 18; the lack of provision for adults; the contention that the brain stops developing at around 25 years of age; that clinicians are not to prescribe more than 10mg/kg; that pregnant women should be able to access Kuvan; challenges facing mothers of PKU children; and lack of recommendations for PKU sufferers with learning disabilities. We urge the NICE committee to listen carefully to the feedback from the consultation process and revise its guidance to provide Kuvan for all PKU sufferers.
On Thursday morning I attended an update Zoom meeting about the serious coronavirus situation at the DVLA organised by PCS trade union. PCS have been calling on the DVLA to revert to the original position it took at the beginning of the first lockdown in March 2020, where only 500 staff were working in a safe, secure-coronavirus environment on the DVLA Estate, whilst the remainder worked from home. Unfortunately, in the subsequent months, the DVLA insisted that over 2000 of its workers return to work on the estate, resulting in over 600 positive coronavirus cases across the DVLA estate since September 2020, which was the largest workplace outbreak in the UK. PCS has been calling on the DVLA to implement safety measures over the DVLA estate, and allow more staff to work from home, but without success. As a result of the non-action by the DVLA, hundreds of staff at the DVLA will take strike action from Tuesday 6th to Friday 11th April. These will include all operational staff who have been forced to go into workplaces across the DVLA Estate. Action short of strike will be taken by all staff from Saturday 10th April, which includes not working overtime and working to rule, which will not allow the DVLA to call in staff to cover those on strike. PCS will continue to engage in intensive talks with the DVLA next week and re-present its proposals to ensure that staff are safe now and in the future. Taking strike is always a last resort but if the DVLA continues to flagrantly disregard workers’ safety, there is no other choice.
On Thursday afternoon I joined the APPG on Legal Aid’s Westminster Commission Inquiry into the Sustainability of Legal Aid final evidence session on the experiences of Junior Lawyers, chaired by Karen Buck MP for Westminster North. I was proud to be part of the Bach Commission: Access to Justice set up in September 2015, made up of 13 commissioners from every branch of the legal system, plus legal advisers. We met for the first time in January 2016 and received over 100 written submissions and held many oral evidence sessions featuring legal practitioners and academics. We considered the scope of legal aid and the eligibility rules, and published an Interim Report in November 2016 followed by a Final Report in September 2017. Our findings and recommendations to improve provisions in the sector are set out in the Final Report – The Right To Justice.
Unfortunately, the UK Tory Government did not implement any of our recommendations, hence the need for this further commission. In this session we heard of the experiences of 5 junior lawyers, who entered the profession by very different routes, but when they decided to become lawyers, they shared the same aspiration to become a legal aid lawyer, because they are all dedicated to helping those who are without representation and in desperate need of legal advice. We heard the difficulties of getting into debt when they were becoming qualified, the intense competition of securing a Training Contract or a Pupillage, and the poor remuneration of qualified legal aid lawyers in comparison with lawyers who work for the CPS. The APPG has assembled a group of academics to help analyse the evidence from all the sessions and are also running a connected research project with UCL to gather baseline data about the legal aid workforce, with a view to publishing recommendations for government in Spring/Summer 2021.
I welcomed the news this week that the Welsh Labour Government, working in partnership with Neath Port Talbot and Powys Councils, have confirmed a £50 million capital funding loan to be made available for the Global Centre of Rail Excellence. The Centre will be located on the site of Nant Helen opencast mine and coal washery in Onllwyn. The formal planning application, submitted this week, proposes a purpose-built, modern railway infrastructure, systems and rolling stock test and validation complex. It is hoped the facility will act as a driver for accelerated rail industry innovation, investment and growth in Wales. We know how hard our community has been hit by the economic damage caused by the pandemic, and it’s fantastic to see such investment from the Welsh Labour Government in Neath, in a project that will bring employment and innovation to the area.
This week has been Debt Awareness Week and this year’s campaign is about destigmatising debt. Anyone can fall into debt and during this pandemic, many people who never dreamed they’d be in debt have been forced into debt as a result of the terrible impacts of the pandemic. Talking about money is often difficult and talking about money problems can be even more so. However, it’s vital to take that first step in discussing money problems with family or friends if you don’t yet feel ready to reach out for help. Step Change have some fantastic advice for those struggling to deal with money worries and stress and can help find the support you need to get out of debt.
As I’m sure you will have seen, Coronavirus restrictions will change this weekend in Wales, with travel now permitted across the nation, the reopening of self-contained holiday accommodation and six people from two different households allowed to meet up outside. These changes are as a direct result of the work we have all done to stick to the rules and drive the infection rate down, as well as our world leading vaccination programme. I hope everyone is able to enjoy some long-awaited reunions with friends and family members over the Easter holidays – but please do remember to stick to social distancing rules so that we maintain the progress we have made.
As always, if you have any questions or issues and want to get in touch about matters that fall under my role as an MP, please do not hesitate to drop us an email on firstname.lastname@example.org or call us on 01639 630152. My staff are working from home to comply with the social distancing measures, but, as always, we remain there should you need to get in contact with us.
I hope you stay well, and remember – observe social distancing, wash your hands regularly and keep Wales safe.