31.05.2025
ADHD diagnosis life-changing but long waits on the NHS need urgent action
The appeal follows new research, which found that nine in ten people (87%) in England want to see improvements in health and social care services.
A third of people think about their health every single day, yet one in five (19%) say they don’t have enough time to report on their health and social care experiences. The average person estimates that it takes almost nine minutes to give feedback when, in reality, it can take as little as three minutes.
The campaign aims to make more people aware of how they can give feedback and highlight the spare moments in people’s days that they could use to do this – for example whilst waiting for the kettle to boil or waiting for a train or bus.
The poll reveals that the average person spends nearly two hours a day scrolling on their phone – doubling to nearly four hours for those under the age of 24, highlighting that many people have more opportunities to feedback than they think. The research also found that 53% of people would like to use their free time more productively, with two in five (42%) feeling guilty about not completing more small tasks.
Sharing feedback on health and social care is one such small task that can make a big difference. Public feedback can play a vital role in helping health and social care services identify ways to make support better – for example making GP services more accessible, or ensuring clinics have the right equipment available for individual needs. However, only a minority of people have provided feedback to care services.
Support Share for Better Care Week
To help improve health and social care across England, Dr Ranj, CQC and Healthwatch England have launched Share for Better Care Week to encourage everyone to spare as little as three minutes to share their care experiences.
Dr. Ranj Singh said: “Health is the foundation of our lives. However, this survey shows that while a third of us think about our health daily, few provide the essential feedback on the healthcare we receive. As a doctor, this feedback is indispensable, it reveals patient experiences, pinpoints areas for improvement, and, ultimately, enhances the quality of care. In my role I’ve heard so many patient stories, whether it is positive experience or constructive feedback. Sharing that feedback is what will make a real difference.”
James Bullion, interim Chief Inspector of Adult Social Care and Integrated Care said: “People’s feedback is essential to our regulation of health and adult social care services. Our campaign wants to celebrate the great care being provided by staff across England, as well as encourage people to share feedback about their experiences – good and bad.
“CQC and Healthwatch have a shared ambition alongside health and social care providers and the community and voluntary sector, to support people to give feedback about their care experiences, so these experiences can be used to both celebrate great care, and drive improvements where needed.”
Feedback plays a vital role in helping health and social care services identify both good and bad care but there are currently many missed opportunities. The research further revealed that nearly half of adults (42%) regret not sharing feedback on care, and a staggering 40% don’t know that they can give feedback or how to do so.
Louise Ansari, our Chief Executive said: “Whether positive or negative, big or small, your feedback helps health and care services understand what works well and what needs improvement.
“So if you have a moment today, whether you’re scrolling on your phone, making a cup of tea or waiting for the bus, please share feedback on the NHS or social care services you use.
“Speaking up about your care doesn’t take long but can make a real difference to you and your community.”
Take three minutes to share your experiences
NHS and social care staff are doing everything they can to keep us well during these challenging times, but there might be things that can be improved for you and your loved ones, both in the area you live in and across the country.
We’re looking for participants to take part in research on NHS healthcare travel costs.
Are you?
- Over the age of 18?
- Live in South Tyneside or Sunderland area?
If so, we would like to talk to you about NHS healthcare travel costs.
What does it involve?
- You will be asked to attend a 1 hour focus group. You can do this in person or online.
- You will receive a £25 gift voucher for completing the research.
- Your identity will be kept private. You can stop being involved at any time.
Interested in taking part?
Sunderland University will be carrying out the research. Please contact them using the following details:
Phone – 07444 226 397
Email – health.literacy@sunderland.ac.uk
The drug, fenfluramine, was funded for NHS patients in England from Thursday February 20, after the National Institute for Health and Care Excellence (NICE) recommended it for seizures associated with Lennox–Gastaut syndrome (LGS) in people aged 2 years and over.
It is the first non-cannabis based treatment approved for this form of epilepsy.
LGS is a rare, lifelong, and treatment-resistant form of epilepsy that causes frequent, unpredictable, and debilitating seizures. In severe cases, children may experience multiple seizures throughout the day, significantly impacting their quality of life. These seizures often lead to cognitive issues, difficulties with mobility, and an increased risk of injury due to sudden loss of muscle control.
Fenfluramine is an oral liquid medicine taken daily, with the dose tailored to each patient based on their weight. It works by increasing the levels of serotonin in the brain, which helps to reduce seizure activity.
Professor Stephen Powis, National Medical Director for NHS England said: “For children and families living with Lennox–Gastaut syndrome, every day can be challenging, facing unpredictable and life-limiting seizures, and this new treatment option on the NHS will now offer new hope, giving many the chance for greater stability and a better quality of life.
“To have a proven, evidence-based new medicine that can be taken at home to help control and reduce their child’s seizures, and for example lower the risk of them experiencing injuries and needing to go to hospital, is fantastic news for hundreds of families.
“Fenfluramine will offer a vital alternative for those who can’t tolerate existing cannabis-based treatment and the fast-tracking of this treatment to be available from today is another example of the NHS’s commitment to ensuring access to the best therapies that deliver real benefits to patients as well as value for the taxpayer.”
Around 60,000 children in England are living with epilepsy and it is estimated that between 1 and 2% of those have Lennox-Gastaut syndrome.
Previously, the only treatment recommended by NICE for LGS was cannabidiol (Epidyolex®) with clobazam, which was approved in 2019.
LGS is highly resistant to many anti-epileptic drugs, making seizure control extremely challenging — fenfluramine now provides a crucial new option for patients who have not responded to existing treatments or for people who cannot take clobazam, due to its side effects, which can include excessive drowsiness, sedation, irritability, and dependence with long-term use.
Clinical trials have demonstrated that fenfluramine can reduce the frequency of drop seizures – which cause a loss of consciousness and muscle control – by 26.5% on average, more than three times the reduction seen in the placebo arm. More than a quarter (25.3%) of patients experienced a 50% or greater reduction in drop seizure frequency, compared to just 10.3% in the placebo group.
Clinical evidence suggests that fenfluramine not only reduces seizure frequency but also significantly reduces the risk of hospitalisation and needing emergency care.
Michael and Paul Atwal-Brice have 2 older boys with severe epilepsy. One – Levi – suffers from LGS. Michael said: “This is really positive news for families like ours. Levi suffers from extremely serious seizures, and having to use a cocktail of drugs to treat them has been really difficult. The side-effects have been impossible to manage as it’s hard to know which medication is causing them. Fenfluramine is potentially life-changing for Levi and our family.”
Lisa Suchet is a mum and carer of her 10-year-old son, who lives LGS. She said: “It’s wonderful news that NICE has approved Fenfluramine for patients with Lennox Gastaut syndrome.
“My son has suffered with seizures since he was 5 weeks of age, including drop seizures which are the most devastating. They occur without warning, cause immediate collapse and the risk of head injury is high due to the sudden fall. There are so few effective drugs for seizure control. Many don’t work for all patients; many have debilitating side effects or interactions with other meds a patient might have to take.
“That there is another option now available, which has shown effective results and minimal side effects is a huge comfort. It is essentially providing a chance of seizure freedom, which is essentially another chance at life really; for the patient and the family or carers who are impacted so significantly by this awful disease.”
Helen Knight, director of medicines evaluation at NICE, said: “The often distressing and life-limiting nature of this very difficult to control epilepsy means that any new treatment options are particularly welcome.
“In recommending fenfluramine the independent committee took into account the rarity and severity of Lennox Gastaut syndrome, the significant impact it has on the quality of life of people with the condition and their families and carers, and the high need for effective treatments, particularly for people who aren’t able to take cannabidiol with clobazam.”
NHS England is using its Innovative Medicines Fund to fast-track the treatment to eligible patients through an interim arrangement that will be three months faster.
This is the second indication that the NHS will offer the drug for, having commissioned fenfluramine for treating seizures caused by another rare form of epilepsy known as Dravet syndrome since 2022.
While Lennox–Gastaut syndrome most commonly develops between the ages of three and five years, today’s approval will provide access to all clinically eligible patients aged two years and over, including adult patients, with most children and young people with LGS continuing to have seizures into adult life.
Fenfluramine is manufactured by UCB Pharma, a Belgium-based pharmaceutical company and one of the UK’s largest life sciences investors.
Nadeem Aurangzeb, Head of Rare & Epilepsy, UCB UK & Ireland, said: “LGS is a rare and severe form of epilepsy which significantly impacts the quality of life of those living with it as well as those living with and caring for them. We are delighted that eligible patients in England, Wales and Northern Ireland are now able to access this treatment.”
This is the latest innovative treatment to be offered by the NHS. In January, the NHS announced a deal to offer curative sickle cell gene therapy, Casgevy®, which is being made in the UK, and follows a deal in December for the eye cancer drug tebantafusp, developed by the Oxford-based company Immunocore.
This is a global programme which recognises nursing and midwifery excellence. It aims to create a positive work environment for nursing and midwifery staff, improving their job satisfaction and retention rates.
The Pathway programme focusses on transformational leadership, quality, safety, professional development and staff wellbeing. The programme also supports the shared governance through collective leadership model.
It is delivered by the American Nurses Credentialing Centre (ANCC).
The Trust has now become the eighth NHS Trust in England and the first in the North East to gain Pathway to Excellence designation.
It has also broken ground by being the biggest nursing and midwifery workforce to achieve designation so far.
It is the only Trust in England to include midwives and to involve all nurses and midwives from both hospital and community services.
Members of the West – South Tyneside Integrated Community Nursing Teams with their survey station.
The Trust started its preparation for designation in 2019, but then faced the global Covid-19 pandemic, but re-launched work on the programme in 2022.
Following news of the designation, the Trust has received congratulations from David Purdue, Regional Chief Nurse for NHS England in the North East and North Yorkshire, and Duncan Burton, Chief Nursing Officer for England.
Melanie Johnson is Executive Director of Nursing, Midwifery and Allied Health Professionals.
She said: “We are delighted to have achieved this international accreditation.
“Achieving designation is testament to our incredible teams who have embraced the concept of collective leadership and the standards set out by the ANCC.
“This is reflected in the excellent standard of care they give to our patients, day in, day out.
“The accreditation highlights the positive environment of our organisation, as well as our commitment to the Trust’s vision to deliver ‘Excellence in all that we do.”
Sharon McDowell, Assistant Director of Nursing (Collective Leadership) led the Trust’s work on the submission.
She said: “The Pathway to Excellence® programme highlights best practice that can be shared far and wide.
“The programme also helps us to identify any improvements needed so we can continue to strive for the best experience possible for both our staff and patients.”
The ANCC sets out the Pathway as a commitment to creating a healthy work environment, where nurses and midwives feel empowered and have a voice in both policy and practice.
Successful accreditation is based on written evidence to meet the six pathway standards.
The Trust was then required to validate the evidence through a survey which looked at:
- professional development
- shared decision making
- leadership
- safety
- quality
- wellbeing
The accreditation looked for a response rate of 60%, with the Trust hitting a response rate of 75% and excelling in the number of positive responses received.
The ANCC congratulated STSFT on the achievement of their high scores in the validation survey.
For more information on the Pathway to Excellence programme visit https://www.nursingworld.org/pathway
The NHS in England has launched its first-ever awareness campaign to highlight the benefits of screening and encourage more women to make the most of regular mammograms, as figures show more than four in ten (46.3%) invited for the first time don’t act on their invitation.
The campaign – supported by leading charity Breast Cancer Now – launches with a new advert across TV, radio and online to highlight that screening can detect any cancers as early as possible, while providing reassurance and relief to millions of women who get the all-clear.
New NHS estimates suggest that if screening attendance could be improved to 80% of those eligible next year (2025/26), nearly a million more women (around 925,000) could be screened, compared to 2022/23 – with over 7,500 additional breast cancers detected at an earlier stage, when they are more treatable.
The landmark NHS campaign sees celebrities including Newsnight anchor Victoria Derbyshire, broadcaster and presenter Julia Bradbury, and Strictly Come Dancing judge Shirley Ballas write ‘unofficial’ invitation letters to women about their personal experiences of screening to reassure them and encourage them to attend. They are joined by cancer survivors, NHS staff and TV doctors in sharing letters in a number of moving films launched today.
In her open letter to women invited for screening, Victoria Derbyshire said: “I’ve had breast screening multiple times. For me it was painless and I was happy to be screened; my motivation was to make sure any irregularities were picked up – because the earlier breast cancer is detected, the greater the chance of survival. When I was diagnosed, I thought I wouldn’t get to see my two little boys grow up (then aged 8 and 11). I thought I wouldn’t get to grow old with my partner Mark. I’m still here thanks to the skill of the NHS – 2025 will be 10 years since I was diagnosed. Breast screening might just help save your life. Please go.”
The campaign comes as a new survey of 2,000 women for the NHS showed that almost 40% rarely or never talk about breast screening with their female friends and families, and almost a quarter (24%) of women said they wouldn’t attend if they didn’t already have symptoms like a lump.
More than a fifth (21%) also said that embarrassment at being topless in front of someone would prevent them from attending. Concerns about screening being painful (18.5%) also feature. However, 83.2% said they would attend breast screening if they were invited.
NHS national cancer director, Dame Cally Palmer, said: “Breast screening detects breast cancers earlier and saves lives – but we know for many women there can be lots of reasons why they might be reluctant to come forward, or why it’s not top of the priority list in their very busy lives. That’s why the NHS has today launched its first-ever campaign to support more women to make the most of breast screening and to address some of the misgivings and misconceptions they might have.
“We hope that by hearing other women’s stories, it will reassure them and remind them why screening is so important. Cancer survival is at an all-time high in England thanks to a real focus on early detection – and we want hundreds of thousands more women to access screening so that any breast cancers can be spotted as early as possible to help save more lives.”
Dr Louise Wilkinson, NHS national speciality advisor for breast screening said: “It’s incredibly important that women feel engaged with breast screening and understand why it matters. This campaign is about sharing experiences and understanding why some women might be reluctant to come forward, but we want to help them work through any reservations so we can encourage even more women to take up their invitation and ultimately save lives.”
Thanks to the hard work of NHS teams, the number of women attending breast screening has risen since 2020/21, with latest data for 2022/23 showing that 4.30 million women had been screened in the last three years (66.4% of those eligible).
Latest data on the proportion of the number of women who attend screening after being invited (uptake) shows around a third are still not attending, which increases to 46.3% of those invited for the first time.
When Liz Jadav from Kennington in London turned 50, she received an appointment letter for her first breast screening. After her appointment, she was asked to return for more tests. Although Liz had no symptoms and was otherwise fit and healthy, the results confirmed that she had breast cancer. She was thankful that the cancer had been caught at an early stage, and to be able to start discussing treatment straight away.
Liz had been about to start a job with the Royal Shakespeare Company, so her first question after diagnosis was, ‘How is this going to affect my work?’ Her employer was very supportive. Liz attended the first day of rehearsals, underwent surgery to remove the cancer on the second day, and was back with the company by the end of the week. Following the success of the surgery, Liz received radiotherapy; she will continue taking a daily pill for a few more years to reduce the risk of cancer returning, and attends yearly mammograms.
Liz said: “I think lots of women are worried about a cancer diagnosis and this puts them off from going to their screening appointment. But the mammogram isn’t cancer. The mammogram is knowledge. Without my mammogram I wouldn’t have known that I had breast cancer. I wouldn’t have been offered treatment. And lots of other things might not have happened. I’d say, when you’re invited for breast screening, make the time to go to your appointment. You’ll be glad you did.’
Amanda Pritchard, NHS chief executive, said: “Lives are saved when cancers are caught early, and we hope this first-of-its-kind campaign for the NHS will help encourage thousands more women to have more regular breast screening.
“If we can help more people access NHS screening, we have a real opportunity to detect thousands more breast cancers early and ultimately save more lives.
“Getting your screening sorted can help to provide reassurance if you are concerned, and attending your appointment could help save your life.”
Claire Rowney, chief executive at Breast Cancer Now, said: “We’re absolutely thrilled at NHS England’s announcement today that they’re funding the first-ever breast screening awareness campaign to encourage more women to attend breast screening when invited – for too long thousands of women have missed out on the vital screening that saves lives from breast cancer.
“We know there are many reasons behind women not taking up their screening invite, and that uptake is lower amongst specific groups – including those living in more deprived areas and from certain minority ethnic communities – driving inequalities in early diagnosis and breast cancer survival. As such, NHS England’s plans to focus especially on reaching women who are less likely to get screened and often face additional barriers to attending, is so crucial to the success of this campaign.
“We look forward to working closely with NHS England to maximise the impact of this campaign and ensure screening is more accessible to everyone who is eligible.”
Jo Harby, director of health information at Cancer Research UK, said: “Every day, more than 150 people are diagnosed with breast cancer in the UK. Thanks to the national breast screening programme, thousands of cancer cases are detected at an earlier stage when treatment is more likely to be successful. Improving access for people who want to attend screening is vital, and using digital tools, such as the NHS app, is one way to help with this.
“It’s your choice whether to attend breast screening, and that’s why it’s so important to read the information that comes with your invitation. Screening is for people without symptoms – if you notice any changes that aren’t normal for you, don’t wait for your next screening invite, talk to your doctor.”
Public Health Minister, Ashley Dalton, said: “As someone living with metastatic breast cancer, I know the importance of screening and early diagnosis. I urge all women to come forward for screening when they are contacted by the NHS – it could be life saving.
“Over the coming year, the investment and reforms this government is making will see an extra 100,000 patients are seen on time. We have also started using the latest AI technologies to help catch the disease earlier.
“We will publish a dedicated national cancer plan this year, to make Britain a world leader in saving lives, and to make the NHS fit for the future through our Plan for Change.”
Mary Kelly Foy, the Member of Parliament for the City of Durham in the North East of England, said: “I’m a breast cancer survivor. The reason why I’m here today is because I took up my breast cancer screening invitation at the start of 2024.
“It was caught early, which meant that by the summer of 2024 I was cancer free. Of course, it was heartbreaking to discover that I had breast cancer, but it’s important to remember that the vast majority of women who have a screening won’t have it.
“When you receive your invitation, please don’t put it off. It could just save your life.”
Last year alone, NHS breast screening services detected cancers in 18,942 women across England, which otherwise may not have been diagnosed or treated until a later stage, and the most comprehensive review to date found around 1,300 deaths are prevented each year by the breast screening programme.
Women registered with a GP are automatically invited for NHS breast screening for the first time between the ages of 50 and 53, then every three years until their 71st birthday – while women aged 71 and over can self-refer for screening.
While most women attending screening will receive peace of mind that they have no early signs of breast cancer, the NHS encouraged women to ensure they continue to check their breasts regularly between their screening appointments and to get any unusual changes checked out by their GP.
Breast screening does have some risks. Some women who have screening will be diagnosed and treated for slow-growing breast cancers that may never otherwise have been found or caused them harm. Mammograms also do not always find a cancer that is there, but most people feel the benefits of breast screening outweigh the possible risks.
As part of efforts to drive uptake of breast screening, the NHS is launching a new “ping and book” service, with women already starting to get alerts to their phones via the NHS App to remind them they are due or overdue an appointment, with new functionality being developed to enable millions to book screening directly through the NHS App next year.
The NHS is diagnosing more people than ever before with cancer at an early stage, and latest monthly figures show the NHS met the cancer faster diagnosis standard in November for the eighth month out of the last ten, with 77% of people getting the all clear or a cancer diagnosis within four weeks.
NHS England confirmed last month that the performance standard would be increased so that 80% of patients receive a diagnosis or have cancer ruled out within 4 weeks by March 2026. This change will see around 100,000 more patients who are referred for cancer checks receive a diagnosis or the all-clear within 4 weeks next year.
Charles Smith has taken part in a series of trials around age-related macular degeneration (AMD) during the last 15 years through Sunderland Eye Infirmary. He has also helped shape its service by offering his views.
He backed the Research Team at Sunderland and South Tyneside NHS Foundation Trust as it joined in studies which look to improve the treatment of eye conditions. It is thought he is the longest serving patient of its ophthalmology studies.
The hospital has one of the largest Macular Degeneration services in the country, with 23,000 intravitreal injections carried out each year at its site or satellite clinic at Durham Treatment Centre (DTC).
It is also one of the most research-active Ophthalmology units in the country, with 18 active trials live at this time. It is the only location in the North East which is taking part in gene therapy in its specialist area.
Trials are advertised to patients at the hospital, while team members can also refer them if they feel appropriate so they can find out more. There is also a database of people who have asked to support the studies, so they can be contacted if one comes up and is looking into the condition they are being treated for.
Work is under way to build a new eye hospital in Sunderland city centre as part of the Riverside Sunderland development site. It is on land where the Vaux Brewery once stood.
To support its staff, patients and visitors, the Vision Appeal is raising funds to buy extras to support a better patient experience and additional equipment.
Charles, 88, who was born and raised in Roker, Sunderland, but now lives in Lanchester in County Durham, has wet age-related macular degeneration in his left eye and dry age-related macular degeneration in his right.
Wet AMD is caused by the abnormal growth of blood vessels in the part of the retina called the macula. People with wet AMD will often experience sudden changes in their vision.
Dry AMD is a gradual deterioration of the macula as the retinal cells die off and are not renewed. The term dry does not mean the person has dry eyes.
The conditions affect the middle part of a person’s vision and while it does not cause total blindness, it can make things like reading and recognising faces difficult.
Charles first signed up to one of the Trust’s first interventional trials called Merlot in 2010.
Over a two-year period, it looked at the effects of brachytherapy on patients. This is a form of radiation therapy and has been used alongside lucentis, a type of prescription injection, which treats certain eye conditions. These include wet age-related macular degeneration (AMD).
Then in 2015, Charles was involved in a patient and public involvement campaign called Making Research Better. He helped review literature and gave feedback as part of a focus group.
His final way of supporting research was joining in a trial called Oaks, which looked at effects of dry AMD. This lasted two years.
In 2022, this study rolled into the Gale study, an extension of this work. It looked at the long terms effects of a drug called Pegcetacoplan.
This has now come to an end, which made his most recent visit to Sunderland Eye Infirmary his last one.
Alongside his wife Nancy, 81, the couple were presented with a Marks and Spencer hamper – including a bottle of Merlot in recognition of the first study he joined in.
Charles Smith with Sunderland Eye Infirmary Research Nurses Steve Dodds, Michelle Young and Karen Davidson, with Clinical Director Ajay Kotagiri second from left.
His check-ups will now take place at DTC, as this is nearer to their home.
During his working life, Charles was a district manager for Woolworths, while Nancy worked as a senior care assistant in a nursing home. They have three children, five grandchildren and a great-granddaughter.
Charles said: “I felt as though I owed something and wanted to be useful and it was a way to say thank you for what the hospital has done for me.
“In fact, it became a bit of a habit and I would come every so many weeks, and would always look forward to it and to meeting the staff.
“I’m a bit surprised by the gift, but it is very kind.”
Nancy said: “If Charles knows there’s a way to help, he feels he must. He really likes the staff, they have always been good, but we’ll still be going to the centre at Belmont every six weeks for his regular appointments.”
Steve Dodds is a research nurse at the hospital. He said: “Charles has always been very keen to get involved and we think he must be out longest serving research patient of ophthalmology.
“Our patient population is an aging one and that’s what our research is often looking to help, so to have someone as long term as he has been and to have him not involved in just one study but two, has been such a help.”
Head of Research Claire Livingstone added: “Charles has been the epitome of patient engagement and collaboration.
“We are delighted that he has agreed to share his experience.
“We will use Charles’ story as an example of how we are putting our patients and public at the heart of research.”
For more information visit its information page: Vision Appeal
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