Tag: 2023

The press release issued by the Department of Health and Social Care on 28 February 2023.

Government campaign promotes NHS advice on weaning as survey finds half of parents in England are confused about how much to feed their baby in the process.

Parents are being supported to safely introduce their babies to solid food through a government campaign that promotes NHS advice on weaning.

Weaning is a key milestone within the first 1,001 critical days. It teaches babies to move food around their mouth, chew and swallow, and influences children’s eating habits and their health later in life.

The campaign highlights there are 3 clear signs that mean your baby is ready for solid food, such as if they can stay in a sitting position, holding their head steady. It also includes information on when to begin introducing solid foods alongside breastmilk or first infant formula, why it’s important to wait until your baby is around 6 months old and what to feed babies at each stage.

The campaign comes as a new survey conducted by Censuswide has found that half of parents in England (50%) were confused about how much to feed their baby and what age to start weaning (47%), with many saying they had received conflicting advice on both points. It also found that nearly half of parents were influenced by behaviours that can be mistaken by parents as signs that their baby is ready for solid foods, such as seeing their baby grabbing food (47%) or looking at food (43%).

Minister for Primary Care and Public Health Neil O’Brien said:

The first 1,001 days are crucial for a child’s development and weaning can influence a baby’s eating habits and their health later in life.

This campaign will ensure parents have the confidence to introduce their babies to solid food at the appropriate time and provide practical advice and a support hub to ensure their diets include a wide variety of foods.

We’re committed to supporting the early years, including by providing over £300 million to create family hubs in 75 local authorities to join up and enhance services, ensuring all parents and carers can access the support they need at the time that they need it.

The survey also found that nearly half (46%) of parents believed that solid foods should be introduced at around 5 months or earlier. But, according to NHS guidance, it is recommended to gradually introduce solid foods from around 6 months – alongside breast milk or infant formula. This is because it gives babies time to develop properly so they can cope with solid foods.

Breast milk or first infant formula provides everything that babies need for healthy development for the first 6 months. When babies are around 6 months old, they start to need solid foods as well as breast milk or first infant formula to meet their nutritional needs.

With more than 1 in 4 (27.7%) children being overweight when they reach school age, according to the latest National Child Measurement Programme data, the Better Health Start for Life ‘introducing solid foods’ campaign supports parents to develop their children’s healthy eating habits at the earliest stage.

In addition to the campaign, an online weaning hub is available to support parents on their weaning journey. Packed with NHS-endorsed advice, videos and tips, plus simple healthy recipes, it puts everything parents need to know in one place.

Child nutritionist, Charlotte Stirling Reed, said:

As a mum and a nutritionist, I’m in agreement with today’s survey findings – weaning can be a very confusing and overwhelming time for parents.

You can start with single vegetables and fruits that are mashed or blended. I’ve always found preparing food from scratch is the easiest and cheapest way to create healthier meals for my children, and have used the Start for Life weaning hub for great recipes which are really easy to make and nutritious.

GP Dr Helen Lawal said:

Weaning is a crucial milestone in the first 1,001 critical days of a baby’s life; however, today’s research results are showing that almost half of parents are introducing solid foods to their babies too early.

The Start of Life weaning hub will help you to spot the right signs which show your baby is ready for solid foods, alongside lots of tips on essential topics like allergies, food hygiene and avoiding choking, to help you wean your baby safely.

Courtnay, mum of Oshun, 8 month old, said:

As a mum I’m in agreement with today’s survey findings – weaning can be a very confusing and overwhelming time for parents.

However, it can be simple too – you can start your weaning journey with single vegetables that are mashed, blended or offered as soft finger foods. The Start for Life Weaning Hub has plenty of recipes to help you easily prep meals for your baby, which are easy to make and nutritious.

The press release issued by the Department of Health and Social Care on 28 February 2023.

The 2023 England Rare Diseases Action Plan goes further than ever before to support people living with rare diseases.

• The 2023 England Rare Diseases Action Plan goes further than ever before to support people living with rare diseases
• Building on progress made in the last year, it will make sure people can access specialised care, treatment, holistic support across services and can take part in research should they want to
• The government has worked closely with the healthcare system and rare diseases community to identify 13 actions to drive further improvement

A new Rare Diseases Action Plan for England has been published today that will ensure those living with these conditions receive better care and treatment, fairer access to testing and have continued support.

This builds on the first ever Rare Diseases Action Plan for England published in 2022, which has developed digital tools to put information on rare diseases at the fingertips of healthcare staff. It has also helped 1,000 new complex diagnoses for people with rare diseases to be made thanks to advances in genomic research, helping to inform appropriate clinical care for patients.

The new plan lists 13 actions that have been developed with the rare diseases community focussing on faster diagnosis, increased awareness of rare diseases among healthcare staff, better coordination of care and improved access to specialist care, treatments and drugs.

Although rare diseases are individually rare, they are collectively common, with 1 in 17 people affected by a rare disease at some point in their lives, such as spinal muscular atrophy, haemophilia A, epidermolysis bullosa or Huntington’s disease. This new plan will increase data-sharing so we can, for the first time, get a full picture of how people are tested for genetic diseases across England and help get patients a diagnosis faster.

With more than 7,000 rare diseases affecting an estimated 3.5 million people in the UK it is vital that healthcare professionals have the right training to care appropriately for their needs. The new plan will collect evidence on health inequalities faced by people living with rare diseases so they can be addressed by health services, for instance for people not living in areas where specialist centres exist.

Health Minister, Helen Whately, said:

Rare diseases are individually rare but collectively common, affecting 3.5 million people in the UK.

We’ve made huge progress in the last year, making 1,000 complex new diagnoses thanks to advances in genomic research.

But there is still more to do. Our Rare Diseases Action Plan will reduce health inequalities, help people participate in research and join up specialist services better for patients.

Chief Scientific Adviser, Professor Lucy Chappell, said:

The impacts of rare diseases on individuals and their families are wide-ranging. Our research plays an important underpinning role in furthering the understanding, diagnosis, treatment and care for people living with rare diseases.

The action plan highlights significant advances in rare disease research supported through our funding. There is always more to do and our commitments will be supported by the recently announced funding for ground-breaking research into the NIHR Biomedical Research Centres and the Medical Research Council (MRC)-NIHR UK Rare Disease Research Platform.

This research will continue to drive progress and foster collaboration to translate scientific breakthroughs into clinical advances.

Professor Sir Stephen Powis, NHS England Medical Director, said:

We’ve made great progress in securing new medicines for people with a range of rare conditions, including life-saving gene therapy, advancements in genomic testing and sequencing, made possible through the NHS Genomic Medicine Service, where we are a truly world-leading health system.

As well as being an adopter of innovation today, the NHS is developing a strategic approach to prepare for the breakthroughs of tomorrow and enable rapid patient access to future tests and treatments for rare conditions.

Dr Ellen Thomas, Deputy Chief Medical Officer at Genomics England, said:

A decade on from the launch of the ground-breaking 100,000 Genomes Project, it’s vital that we continue to harness the potential of genomics to deliver benefits in diagnosis, treatment and care for those living with rare conditions. Connecting research and clinical care and doing both at national scale is crucial to this and a great strength of the approach we are taking as a country.

In 2022, thanks to this link and work carried out in the National Genomic Research Library, we returned over 1,000 new, complex diagnoses for people with rare conditions to the NHS to help inform the most appropriate clinical care.

We must continue to build on this progress, working alongside national delivery partners across the health system and in close consultation with the rare disease community, to deliver on our shared vision to improve the lives of people living with rare conditions across the UK.

We are also making it easier for people with rare diseases to participate in research should they choose to do so and this will help improve access to specialist care, treatments and drugs.

We will commission work to assess the effectiveness of the UK Rare Diseases Framework and England’s rare diseases action plans in making a difference to people living with rare diseases.

Clear, substantive progress has been mde since the publication of the 2022 Rare Diseases Action Plan for the care and treatment of people with rare diseases. They include:

• improvements to newborn screening for rare diseases, laying the groundwork for families to get a definitive diagnosis as early as possible
• making over 1,000 new complex diagnoses for people with rare diseases thanks to advances in genomic research, helping to inform appropriate clinical care for patients
• the creation and rollout of a toolkit for virtual healthcare consultations to help people with complex, multi-system rare diseases access multiple specialists without needing to travel
• the launch of the Innovative Medicines Fund (IMF) by NHS England and the National Institute for Health and Care Excellence (NICE), to fast-track the most promising, cutting-edge medicines to NHS patients
• the pioneering MELODY COVID-19 study, which allowed people to participate from their own home and informed targeted treatment policies

Looking to the future, the government is funding research and fostering collaborations to accelerate the understanding, diagnosis and therapy of rare diseases. These include the ground-breaking £12 million MRC–NIHR UK Rare Disease Research Platform and £790 million NIHR biomedical research centres, many of which include a focus on rare disease research.

This investment underlines the government’s commitment to securing better, in some cases transformational, outcomes including on gene therapies, which can have transformative outcomes for patients living with rare diseases such as ADA-SCID, haemophilia A or Duchenne muscular dystrophy.

This action plan will help improve the lives of people living with rare diseases across the country and ensure that we can deliver the best possible care to patients as we tackle the COVID backlogs.

Louise Fish, Chief Executive of Genetic Alliance UK, said:

The UK Rare Disease Framework set out a great set of aspirations to improve the lives of people living with rare conditions, and we welcome this second annual action plan setting out the practical steps that will be delivered this year.

We are particularly pleased that National Institute for Health and Care Research funding will be awarded in autumn 2023 to develop the evidence base needed to operationalise better coordination of care in the NHS. Many rare conditions are life-long and complex, and we know from listening to people living with rare conditions and their families that well-coordinated care makes a real difference to their quality of life.

Kerry Leeson-Beevers, Chief Executive of Alström Syndrome UK and Breaking Down Barriers, said:

It has been a privilege to continue working with the England Rare Disease’s Framework Delivery Group as a patient representative.

I have been impressed with the effort the DHSC has made to engage with the rare disease community at different stages throughout the development of England’s second action plan. The DHSC and Breaking Down Barriers (BDB) have continued to work together to ensure the voices of people from diverse and marginalised communities who are also affected by rare conditions are included in these discussions and it was a pleasure to chair the BDB focus group.

While there is clearly more work to be done, I welcome the progress that has been made and the new proposed actions.

I look forward to working with the delivery group in the year ahead to monitor these actions and to identify areas for further development as we work towards ensuring that all people affected by rare conditions have equitable access to appropriate care and support.

Philippa Farrant, Adult Support Coordinator, Wolfram Syndrome UK, said:

I have been involved with the Rare Disease Framework work as a patient representative on the delivery group from when the report was first being written.

It has been a privilege to work with all the agencies involved in putting this complex piece of work together.  Seeing how we can achieve an effective and useful document going forward that not only reflects the official organisations and what they do, but takes into account the patient’s views to help shape the actions has been a really worthwhile time.

For an orphan rare disease community that I represent with less than 100 people in the country, this action plan should mean a better quality of life, more information and more awareness to professionals so that our community is supported better and able to access all services required managing their complex condition.