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The Independent
4 days ago
- Business
- The Independent
‘I'm in pain with endometrosis almost daily but have to justify how bad it is to get care I need'
Zainab Kaleemullah lives with debilitating pain almost daily, and despite a 14-year battle to finally get a diagnosis, she says she still has to justify her pain to get the treatment she needs. The 36-year-old has severe endometriosis and adenomyosis - painful conditions where tissue grows outside of the uterus or into the muscular wall of it - and spent more than a decade making repeated trips to doctors to get to the bottom of the cause. She says she was misdiagnosed with conditions such as irritable bowel syndrome and depression, and even after being diagnosed, she faced a further two-year wait for surgery to remove the harmful tissue. She told The Independent: 'I get pain almost every day now… Sometimes I've felt that my condition isn't taken seriously, or they [medics] think that I perhaps over exaggerated with my pain, or they think it's probably something else.' 'This condition was causing me such debilitating pain, and I almost feel like I have to justify it every single time I talk about it.' Ms Kaleemullah is one of the 25 million people in England struggling with a long-term health condition, such as endometriosis, cystic fibrosis, epilepsy and diabetes. Research shared exclusively with The Independent estimates that around 7.5 million of those are not getting the support they need from NHS services - a 10 per cent in the past five years, according to a study by charity National Voices and think tank Future Health. Patients with long-term conditions account for 70 per cent of GP appointments and 50 per cent of hospital appointments and treatment. Despite this, 11.5 million do not have an NHS plan to help them manage their illness, such as timely access to specialists or correct pain management. The report authors have called for the NHS to be measured on this performance and held to account on patients' experience, alongside its existing targets for A&E and hospital care. Richard Sloggett, programme director for Future Health and a report author, called for the government to prioritise the experiences of patients with long-term conditions. He said: 'This report highlights the challenges millions of patients with long-term conditions are facing in accessing high-quality NHS services and support. There is a danger in yet another NHS restructure that the experience of patients is marginalised. This would be completely counter-productive.' Sharon Brennan, director of policy and advocacy group External Affairs at National Voices, said: 'We know people with long-term conditions feel increasingly alone in managing their health needs, often acting as the single co-ordinator of their care while also trying to maintain a life that is more than just their health conditions 'The NHS must move from a bean-counting culture of data collection and seek to understand the experiences of real people using the NHS.' 'It's like my insides are set alight' Even after surgery, Ms Kaleemullah said she continues to struggle to get the support she needs from the NHS. She said GPs and other specialists fail to see endometriosis as a 'full body illness', presuming instead that it is only associated with periods. 'I can have very debilitating pelvic pain, and it feels almost like my insides have been set alight…I get pain almost every day now. I can't walk long distances because I get really bad, lower back pain, abdominal pain, pelvic pain, get really bad migraines, fatigue… so it's very frustrating when I present myself to the doctor that they don't take into full account that I'm dealing with this at every single day.' Endometriosis, which impacts more than 1.5 million women in the UK, is a condition in which body tissues that line the inside of the uterus can grow outside of the womb, often affecting other organs such as the ovaries and bladder. 'I have to prove I need medication' Mary Saunders from Southport lives with hypothyroidism, a condition where the thyroid gland produces too little thyroid hormone. Patients with the condition need lifelong medication. It took her 16 years to get a correct diagnosis; however, much like Ms Kaleemullah, she has she struggled to manage her condition and access the medication she needed. It took seven years of taking the standard medication, levothyroxine, with persistent new and worsening symptoms occurring, to discover, through her own research, that there was an alternative called liothyronine, which was more expensive for the NHS. This month, the pharmaceutical company Advanz lost a high court appeal against a £99 million fine by the Competition and Markets Authority in 2021, after it increased the cost of liothyronine from £20 a box to £248. NHS doctors eventually agreed she could trial liothyronine but said she would have to buy it privately, so she spent years trying to source the medication more cheaply in Europe. However, when Covid hit and this became impossible, Ms Saunders again sought to get an NHS prescription. To do this, doctors said she would have to 'prove' she needed the medication by coming off of it for six weeks. 'It's like saying to patients. You're gonna be ill for six weeks now, because you're not gonna have what you need, the life-giving medication that supports your body.' Although she is now under an endocrinologist she trusts, Ms Saunders says: 'If my doctor leaves the service, I could be thrown right back where I was, I couldn't count on the NHS, because I have had 16 years of this, I don't count on the NHS.' A Department of Health and Social Care spokesperson said: 'The government inherited a broken NHS, and it is unacceptable that too many people living with long term conditions have not been getting the care they need. 'The 10 Year Health Plan will set out a bold agenda to deliver on the three big shifts needed to move healthcare from hospital to the community, analogue to digital, sickness to prevention, while putting patients at the centre of their own care.'
BBC News
17-04-2025
- Health
- BBC News
Plan for GPs to keep millions of patients out of hospital
A scheme to support GPs to provide care and advice to patients which avoids them joining long NHS hospital waiting lists is being expanded in England, the government will work more closely with specialists to access expert advice quickly for patients with conditions such as irritable bowel syndrome, menopause symptoms and ear by £80m of funding, its ambition is to help two million people receive faster and more convenient care in their local community by the end of 2025/ minister Karen Smyth said the scheme would "save time and stop masses of people having to head to hospital for unnecessary appointments". The expanded scheme is part of the government's plan to cut long NHS waiting lists and create extra appointments for has pledged that 92% of NHS patients will be waiting less than 18 weeks for treatment after referral to a consultant, by the end of this July and December 2024, the scheme diverted 660,000 treatments from hospitals and into the community, the government 'Advice and Guidance', the scheme links GPs and hospital specialists before patients are referred onto waiting lists, so that tests and treatments can be offered in the most convenient example, patients with tinnitus and needing ear wax removal often end up being referred to specialists when they could be helped outside hospitals. And women needing advice on types of HRT could be treated in local hubs, rather than waiting to see a practices are able to claim for each time they use the scheme to shift care from hospital to the community. Health Minister Karin Smyth said the government was "rewiring the NHS" and doing things differently."This scheme is a perfect example of how we are saving patients time and reducing pressure on key NHS services in the process," she said."It will take time to reverse the damaging neglect the NHS has suffered in recent years, but our Plan for Change is starting to deliver benefits for patients, with waiting lists cut by 219,000 since July, and 1,500 new GPs in post."National Voices, which represents health charities in England, said "real choice" must be offered to patients about what the best treatment routes are."We must see strong communication about what the service is and what it means in practical terms for patient care," director of policy Sharon Brennan British Medical Association said in a statement: "We have seen decades of underinvestment in general practice, and this is an important small step in acknowledging the important role of the GP and supporting practices to deliver enhanced care to patients in the community."The journey to bringing back the family doctor has only just begun. Now we must focus on the secretary of state's promise to complete negotiation of a new GP contract within the term of this Parliament in order to safeguard family GP services for the future, and we look forward to working closely with the government to achieve that."
The Guardian
17-02-2025
- Health
- The Guardian
Most NHS users in England affected by dysfunctional admin, report finds
Patients routinely have to chase up test results, receive appointment letters after their appointments and do not know when their treatment will occur because the NHS is so 'dysfunctional'. That is the conclusion of research by two major patients' organisations and the King's Fund, which lays bare a host of problems with the way the health service interacts with it users. Sixty-four percent of people in England who used the NHS or arranged care for someone else over the last year encountered a problem involving its administration or communication. Patients were left frustrated by test results going missing, being unable to change or cancel appointments or having to pursue the results of a test, scan or X-ray. Polling by Ipsos for Healthwatch England, National Voices and the King's Fund found that 52% of the public thought the NHS was good at communicating with patients, but 25% said it was poor. The findings come as Keir Starmer claims that the NHS is making inroads into treatment waiting times by providing 2m extra appointments in his government's first few months in office – seven months ahead of schedule. NHS England provided 2.2m more appointments for planned care – including chemotherapy, radiotherapy and diagnostic tests – between July and November last year than during the same period the year before. This will be highlighted in an appearance by Starmer on Monday intended to show that his administration has begun delivering on its key pledge of 'fixing the NHS'. Among the 64% of the 1,888 adults polled who experienced a difficulty: 32% had to chase up the results of a test, scan or X-ray. 32% had not been told how long they would have to wait for their care or treatment. 23% were unaware of who to contact while they waited. 20% received an invitation to an appointment after the date had passed. 'Admin plays a crucial role in how patients experience health care, yet our research shows many patients find themselves in an admin doom loop, trapped by no-reply emails and unable to access the person or answers they need,' said Jacob Lant, the chief executive of National Voices. People with long-term health conditions, those from ethnic minority backgrounds and poorer people are more likely to have a bad experience of their interaction with the NHS. For example, 75% of those with a chronic illness encountered a problem compared with 57% of those in good health. Julia Cream, a King's Fund policy fellow and co-author of a report containing the survey results, said the findings 'lay bare the day-to-day dysfunction of an NHS that is too often not meeting people's needs and highlights the deep inequalities people experience when they are trying to access and engage with health services'. Patients and carers interviewed for the report, called Lost in the System, described how the administrative issues they encountered led to them suffering stress, anxiety and other mental health issues. Negative experiences also encouraged a perception of waste in the NHS. The vice-chair of the Royal College of GPs, Dr Victoria Tzortzio-Brown, said: 'These issues aren't the fault of hard-working administrative staff across the NHS, but a symptom of a system that's chronically overstretched and understaffed, relying on patchy out-of-date processes and digital infrastructure.' GPs and their colleagues 'are often involved in chasing up test results, missing letters and appointments with our patients, adding to our bureaucratic workload at a time when need for our care is rocketing', she said. In a separate survey, 19% of people thought their local hospital was not a safe place to be treated asked why they thought their hospital was unsafe, 27% said a roof could fall in, 26% cited a rodent infestation and 20% said sewage or flooding could occur. The findings emerged in research undertaken by the pollster Savanta for the Liberal Democrats among a representative sample of the UK adult population about the state of the NHS estate. The party's health and social care spokesperson, Helen Morgan, said: 'It's shocking that so many patients no longer trust the buildings they rely on to get better, fearing the very walls they're treated in might crumble. 'People should only worry about their health not whether the roof will cave in on them.'
