Wednesday 11th May 2022
Our response: Queen’s speech 2022
The UK Government announced its legislative agenda in yesterday’s Queen’s Speech, with 38 Bills listed that the Government looks to introduce in the coming year.
The Queen’s Speech focused on measures to grow and strengthen the economy, such as the Levelling Up and Regeneration Bill which looks to cement the government’s flagship policy of driving localised growth, empowerment and regeneration. The speech outlined plans to set levelling-up missions and publish annual progress reports, which will be key in measuring progress on the ambition to level up disparities in health outcomes, such as narrowing the gap between areas with the highest and lowest levels of healthy life expectancy.
However, announcements specific to health and rare disease were in short supply and limited to the following: Continuation of funding for the NHS to address COVID backlogs. Reform of the Mental Health Act (Draft Mental Health Act Reform Bill). The introduction of legislation to ban conversion therapy (Conversion Therapy Bill)
A lack of action on the cost-of-living crisis
Metabolic Support UK believe it is vital that the UK government urgently and directly addresses the cost-of-living crisis, which is adding further burden to people living with inherited metabolic disorders (IMD). People living with an IMD already face high costs as a result of their condition, such as significant and frequent travel to appointments, lengthy stays in hospital causing disruption to employment and the rising prices of specialised foods.
With 69% of parents/carers for someone living with an IMD having to give up employment or reduce their working hours because of their caring responsibilities and 46% in receipt of some form of financial aid, we would encourage the UK government to address this issue more directly beyond the current focus on employment and monetary policy measures.
Why is there a lack of focus on rare disease in the Queen’s Speech?
Whilst there is no direct mention of rare disease in the Queen’s Speech, it is worth noting that there has been recent government action in the area, giving us hope that our needs are on the agenda.
2022 will see all four devolved nations of the UK publish their Rare Disease Action Plans, with England and Northern Ireland having already launched their plans, with Wales and Scotland imminently set to do so. These action plans outline specific, tangible, and measurable actions that these countries will be undertaking to improve the outcomes of those with a rare disease and builds on the four strategic priorities outlined in the UK Rare Disease Framework published in 2021.
Add to this the recent reformation by NICE as to how they appraise new treatments in England, as well as new measures targeted at improving access to innovative and new treatments, such as the Innovative Medicines Fund (IMF) by NHS England and the Innovative Licensing and Access Pathway (ILAP) launched by the Medicines and Healthcare products Regulatory Agency (MHRA), and it’s clear that the next 12 months are set to be a period of delivery and action.
Our focus at Metabolic Support UK
Whilst we welcome the implementation of the proposed reforms, we continue to advocate for a clearer strategy for all people born with a rare condition. In 2021, the Health Secretary, Savid Javid, set out his intentions to tackle the ‘disease of disparity’. For rare patients, the lack of an equitable service is felt keenly in all areas of their lives and we feel it vital that our needs are considered as part of this work. It is essential that opportunities emerging on the horizon, that have the potential to transform the lives and outcomes of people living with an IMD, are not overlooked.
At Metabolic Support UK, we are committed to improving the lives of all those affected by an IMD. Our strategic projects for the upcoming year, such as a review of metabolic services and clinics in the UK, will be pivotal to our role in seeking to influence the future direction of relevant health policies and legislation.
Wednesday 6th April 2022
Cost of living crisis
The cost of living is rising across the UK at its fastest rate in 30 years. Price increases are forecast to peak at 8.7% in autumn and the energy price cap is set to increase by 54% in April. Household incomes are predicted to see the largest drop since records began.
Chancellor Rishi Sunak’s Spring Statement set out measures to tackle this crisis. This includes cutting fuel duty of 5p a litre, an increase in the rate at which National Insurance is paid and a pledge for a further £500m into the Household Support Fund to extend it beyond March. This fund allows councils to help the lowest-income and most vulnerable families in their local area.
“We are already struggling…. It’s getting very scary now… I’m not sure what we will do in April”.
Parent to child living with a Urea Cycle Disorder
Living with an inherited metabolic disorder can be expensive and involve significant additional costs in order to manage a condition. The cost of living crisis is likely to compound the financial uncertainty and hardship that many in our community face.
There is presently little statistical evidence on the financial burden for families with a rare disorder. However, research into a small number of disorders have identified serious implications with a call for further work to be carried out (Angelis et al, 2015). This burden has also been documented in The Hidden Costs of Rare Diseases: A Feasibility Study (2016) by Genetic Alliance UK which provides qualitative data on the challenges. These include the costs arising from attending multiple appointments and associated travel and acknowledges increased costs due to accessibility needs, overnight accommodation and childcare arrangements finding all costs were exacerbated by ineffective or absent co-ordination of care.
Families with disabled children face an average extra cost of £581 per month (Scope, 2019).
Families with disabled children are already paying £600 per year more for energy than other households, before the energy price rises coming in April 2022 (Contact, 2022).
Shire’s Rare Disease Impact Report (2013) showed that almost all UK clinicians felt that patients needed to attend more hospital appointments to diagnose and manage a rare disorder than a more common condition. On average, people with Inherited Metabolic Disorders travel 72 miles to attend their appointments (MSUK Annual Survey 2021) which emphasises the burden on finances.
“It’s very worrying. The cost to go to hospital was already expensive as it’s an hour and a half away, the cost has just about doubled and that’s before getting a coffee. If we have no prescription bread, it’s now £2.70 for a loaf for our son. It’s going to make an unhappy, expensive situation worse and raise stress”.
Parent of person living with Homocystinuria
We know that:
46% of respondents to our MSUK Annual Survey 2021 said they are in receipt of some form of financial aid. Most, if not all, of such aid will not see increases that are in line with the rising cost of living.
“The cost of fuel is a big worry. Our fear is with the rising costs of living, but not a rise in the Disability Living Allowance that we receive to help us cope with the extra spends related to the condition and is barely going to cover our basic needs”.
Parent of person living with a Urea Cycle Disorder
69% of parents/carers for someone living with an IMD have had to give up employment or reduce their working hours as a result of their caring responsibilities.
What can you do?
Check to see what financial aid you may be entitled to
There are a number of resources available online to help you find out what you might be able to claim. Enter your details into one of these calculators and you’ll receive an estimate of your entitlement to benefits, tax credits and Universal Credit.
UK Government https://www.gov.uk/benefits-calculators
When it comes to applying for benefits, we recommend visiting the following organisations:
Citizens Advice offers information on each benefit available and advice and assistance in completing forms and any actions you need to take whilst on the benefit and guidance on appeal processes. https://www.citizensadvice.org.uk/benefits/help-if-on-a-low-income/
AdviceNow provides step by step guides to completing forms and offers guidance and tools should a decision lead to appeals https://www.advicenow.org.uk/help-deal-benefit-problems
Turn 2 us offers guidance and practical support on claiming benefits including help finding a local adviser. The site also links to grant giving organisations or charities for additional support if needed. https://www.turn2us.org.uk/
Top tip: When claiming benefits, gather as much evidence as possible. This is particularly important for rare disorders as the reviewer will be unlikely to know the condition. We would recommend beginning a diary to capture an insight into the symptoms, how the condition is managed, and the level of care you need daily. A supporting letter from your consultant will help and can be used towards evidence and you may also wish to consider reaching out to other healthcare professionals involved in yours or the claimants care who may be able to provide a letter of support.
Talk to your local council about the Household Support Fund
The Household Support Fund was announced by the UK government in September 2021. It is funding that will be given to local councils to support the households who need it most with the costs of living.
In the Chancellor’s Spring Statement, it was announced that the Household Support Fund would be doubling from £500m to £1 billion to help vulnerable households.
Who is eligible for the Household Support Fund will vary from one council to another. You will need to contact your local council to find out more about the eligibility criteria and how to apply. To find your local council, enter your postcode on GOV.UK.
Receive support with your travel costs for medical appointments
Check to see if you are eligible to be reimbursed for your travel costs to hospital appointments.
If you’re referred to hospital or other NHS premises for specialist NHS treatment or diagnostic tests by a doctor, dentist or another primary care health professional, you may be able to claim a refund of your travel costs under the Healthcare Travel Costs Scheme (HTCS):
Local hospitals may also have their own support measures. For example, if you travel by public transport to Great Ormond Street Hospital, you may be able to be reimbursed for your travel costs providing you meet certain eligibility criteria:
Understand your household budget and explore ways to reduce costs
This might seem obvious. However, there are many tools available to help you plan the incomings and outgoings in your household. It is important to review this especially considering many expenses increasing or set to increase further.
Top tip: Visit Martin Lewis’ Money Saving Expert website. The site contains advice and shares knowledge about effective ways to save money and ensure you are aware of everything you are entitled to claim for. Signing up to the newsletter provides you with weekly tips to cut costs and helps you to keep on top of your
Get help if you are struggling to pay
It is always a good idea to contact your suppliers as soon as possible and inform them of the situation as they are often able to provide a short-term solution or reduction in costs. For additional help and support, the following organisations offer dedicated support:
For further help read the Martin Lewis “Cost of living survival kit”: https://www.moneysavingexpert.com/family/cost- of-living-survival-kit/
*All information accurately referenced by Metabolic Support UK, however, should you require access to our references, please contact us by email: email@example.com*
Monday 7th March 2022
Rare in Conflict
At Metabolic Support UK we watched the events taking place across the globe this week for Rare Disease Day with a sense of pride but also frustration. For us, it felt uncomfortable to celebrate raising awareness for rare diseases when the background of the conflict in Ukraine was a harsh reminder that we are not doing enough. We are not doing enough for our metabolic community across the globe and want to change that. Rare Disease Day 2022 threw into sharp relief the responsibility we have to connect our awareness raising work to tangible policy changes with a focus on human rights for all.
For people living with metabolic disorders, and all rare conditions, the impact of conflict is particularly devastating. Fleeing your home is traumatic enough, let alone while living with a debilitating rare disease that require frequent medical attention and a specialised diet. In addition, access to healthcare and medication can be severely limited – or blocked completely – further endangering lives. For many rare patients, this is an issue that already impacts their everyday lives; the disparity in access to care and treatments based on where you live is unjust. There are many patient organisations who work hard to bridge this gap, but we are doing so with limited resources and working in a complex, variable global landscape.
There are parts of the world where positive action is taking place; in England the first Rare Diseases Action Plan was launched this week. The UN adoption of the first ever resolution on addressing the challenges of persons living with rare disease and their families, adopted on 16th December 2021 and co-sponsored by 54 countries, shows international collaboration and progress. But for too many people living with rare conditions it is already too late; rare diseases affect an estimated 10% of the global population (affecting an estimated 475 million people globally) and 1/3 of children living with a rare disease die before they reach their fifth birthday.
Our children are inheriting a legacy of discrimination if rare conditions are not given the focus they need. We know rare diseases disproportionately affect children; in the UK 75% of rare diseases affect children and more than 30% of children living with a rare disease will die before their fifth birthday. When lack of access to healthcare for rare patients plays out against a background of political and financial instability, as for so many of our communities worldwide, we see an increase in mortality rates. Ukraine needed us before this current conflict; Ukrainian Department of Health figures show that 80% of patients with rare diseases in Ukraine lose their lives before the age of 5 due to a lack of systematic diagnosis and qualified treatment and more than 90% of Ukrainians were unable to afford treatment because of high prices.
How can we better support our international metabolic and rare community today, tomorrow, and forever? The recent Covid-19 pandemic highlighted that people with rare conditions face disproportionate impact during times of unrest. During the pandemic over 1 in 4 of our UK metabolic community faced delays in accessing medication and over 40% had medical appointments cancelled. Worldwide over 1000 clinical trials were withdrawn or terminated as a result of the pandemic; a devastating impact not only for those living with rare disorders today but for generations to come. For real long-term system change, patient organisations must do more to change the legacy of our work outside the UK, in times of conflict and always. At Metabolic Support UK we are working directly with people living with metabolic conditions providing support and advice but with an increasing focus on challenging the discriminatory health care policies and systems that scaffold poor outcomes for these communities. Patient organisations need a cohesive and proactive approach to force a shift in power, moving from the reactive approach so commonly taken in the rare disease sector to an empowered agenda setting model.
But what about today, tomorrow? We know there are people who do not have access to the healthcare and medical supplies they need right now but there are barriers in place that make it very difficult for organisations like MSUK to provide direct support. Understanding how to help requires knowledge of country-based networks for our metabolic communities and wider international support – both of which are lacking. Challenging these barriers long-term is our focus for real change, pushing us to confront what difference we make outside of showing solidarity via social media posts.
On Ukraine we echo the call of our friends EURORDIS who have released a statement calling on the European Union, the United Nations, WHO Europe and other United Nation (UN) agencies, humanitarian organisations and other rare disease organisations for help in preparation for a potential crisis and to address the challenges of people living with a rare disease in Ukraine.
On a global scale we want equity of opportunity to be considered as a central part of human development. If sustainable development doesn’t include people living with rare conditions and disabled people, then it isn’t equitable development. Despite the bold ambitions of the United Nation’s Sustainable Development Goals (SDGs) people with rare diseases still face the same struggles the SDGs set out to address.
We must act decisively. We must act collaboratively. We must act now.
- We are calling for partners to develop an international action plan for people living with inherited metabolic disorders globally
- Establish an international co-production group of IMD stakeholders to map a global network of peer-to-peer support for our rare communities – in peacetime and beyond
- Lobby pharmaceutical companies who provide medicines for the IMD community to commit to developing a Rare in Conflict charter improving support response for patients in conflict
- Increase our own policy and campaign focused efforts to influence better outcomes for our communities
- Our report ‘Thoughts into Action’ will be launched in Spring 2022, setting out the state of play for people living with inherited metabolic disorders in the UK
*All information accurately referenced by Metabolic Support UK, however, should you require access to our references, please contact us by email: firstname.lastname@example.org*
Monday 9th August 2021
Metabolic Support UK appoints Kirsty Hoyle as new CEO
The Board of Trustees are pleased to announce the formal appointment of Kirsty Hoyle as the new Chief Executive Officer of Metabolic Support UK from August 9th 2021.
Kirsty joins the charity from Transport for All where she served as Chief Executive Officer. An experienced charity leader and strategist, Kirsty has spent her career raising awareness of issues that impact on people’s lives through integrating lived experience, public policy and service delivery.
In the role as Chief Executive of Metabolic Support UK, Kirsty will build on the charity’s 10-year strategy, continuing to improve the lives of patients and families living with Inherited Metabolic Disorders, leading the way in collaborative, evidence-based patient advocacy.
Speaking of her appointment, Kirsty Hoyle said:
“It is a privilege to join Metabolic Support UK in our fortieth year. I look forward to working closely with our Board of Trustees, staff and volunteers to realise our aspirations for the charity and to continue to raise standards for our patients and their families. The work we do is fundamental to improving the lived experience of people with inherited metabolic disorders and I am delighted to have this unique opportunity to serve our communities.’’
Dr Elin Haf Davies, Metabolic Support UK’s Chair of the Board of Trustees said:
“We’re delighted to welcome Kirsty as our new Chief Executive. The world as we know it has changed considerably in the wake of Covid-19 and we are excited that Kirsty will guide us to the new world in a way that addresses the ever-changing needs of our communities and our voice in the eco-system. I want to take this opportunity to thank the team for their hard work and dedication to cover the services in the time gap that we were without a CEO. As a team I look forward to seeing it grow in size and impact moving forward. Welcome Kirsty!”
Monday 7th June 2021
Changes to NHS England Data Collection
NHS Digital will be requesting patient data from GP medical records kept by GP practices in England as part of a new General Practice Data for Planning and Research data collection process. All patients will be automatically opted into this service and data will be collected from GP records commencing on Thursday 1st July 2021. You can read more about this process here.
If you do not want your patient data shared with NHS Digital, you can register a Type 1 Opt-out with your GP practice at any time. You can also change your mind at any time and withdraw a Type 1 Opt-out. To register a Type 1 Opt-out, you must complete the form here and submit this to your GP Practice by Wednesday 23rd June 2021.
If you require any additional/further information, please contact Jess Doyle on email@example.com, who will be happy to assist.
5th October 2020
Lindsay Weaver leaves Metabolic Support UK after nearly six years service and dedicated commitment as our CEO
Lindsay has worked immensely hard to evolve and navigate MSUK through rapidly changing and at times incredibly challenging circumstances. Lindsay has been instrumental in bringing forward an ambitious new strategy with a focused drive to meet priority needs, and develop collaborative evidence-based empowerment and advocacy programmes to ensure the maximum impact for individual patients and caregivers, collective patient communities and the wider stakeholders in the IMD community.
Board of Trustees Chair, Dr Elin Haf Davies “On behalf of all at MSUK, Board, staff, partners and the wider community I want to express my sincere thanks to Lindsay for all that she has done. Her vision and drive will serve MSUK well into the future. I wish her well for the future, with restored health and happiness, and much gratitude for all that you have done in serving our community.”
The decision to leave has been a difficult one for Lindsay, as she shares her thoughts “After much soul searching, I have made the difficult decision to step down as CEO of this wonderful charity. I am full of emotions as I write this and reflect on my own personal journey from my first few days on the job up to this point now. It has truly been an honour to have served as your CEO for the last 5 and a half years. I did not know back then just how much I would come to love those people that I have had the privilege of working alongside every day. Like most journeys it hasn’t been a straight line but at the other side of every challenge was a success worth waiting and striving for. I am proud of all that we have achieved together.
Of course I am filled with sadness that I will not be the person who leads the charity into its future, but I have no doubt that the incredible Trustees and amazing team of staff with their collaborative spirit and pursuit of innovation will ensure that the best days of this charity lie ahead of it. I have no doubt that the needs of patients and their families living with these immensely difficult disorders will remain at the forefront of all this charity does.
I leave with nothing but good wishes for the future and will always remain a supporter and champion of this great cause”.
Chief Operating Officer Joanne Byrne will step up as interim-CEO with immediate effect.