Comments from PAO UK on The UK Government’s 10-Year Health Plan for England: ‘Fit for the Future’

Improving Care for Mothers with PAO

Pregnancy Associated Osteoporosis (PAO) UK is a recently registered healthcare charity dedicated to raising awareness of PAO and ending the current invisibility of this condition within maternity and healthcare services. It is focused on reducing diagnosis time and improving care and outcomes for affected mothers, their families and communities.

Transforming the NHS

PAO UK welcomes the Government’s plan to transform and modernise the NHS, with its priority to deliver integrated, accessible care and greater transparency around quality of care. PAO UK also welcomes the Government’s commitment to train and ensure there are more GPs. Along with the Royal College of Physicians and other charities, PAO UK welcomes the Government’s ambition for more research, development and innovation.

Along with UK Genetic Alliance / Rare Disease UK and other rare disease and healthcare charities, PAO UK welcomes the Plan’s focus on personalised, patient-centred care and establishing national standards for high-quality healthcare. In addition, PAO UK supports the rare disease sector’s calls for a renewed UK Rare Diseases Framework, currently still under Government review.

PAO UK further agrees with the Patients Association who say “For too long, the NHS has made decisions about patients, not in partnership with them” and their statement that “the NHS must embed a culture of listening to patients, where they are involved at every stage, not sidelined or treated as an afterthought.”

Faster Diagnosis of Pregnancy Associated Osteoporosis

All at PAO UK welcome the Plan’s ambition for faster diagnosis and have been campaigning for improved and earlier PAO diagnosis through the campaign #MeasureThatMum. Height loss is one of the condition’s key red flags, yet PAO is often missed or misdiagnosed by healthcare professionals. Many mothers experience long delays in diagnosis, and it is also thought to be under-diagnosed. Diagnosis delays for PAO can lead to a cascade of multiple spinal and other painful and disabling fractures. Unfortunately, many frontline professionals, including GPs, midwives, health visitors and physiotherapists, have shown a lack of awareness and knowledge of PAO and/or have not listened to or investigated their patients’ concerns.

PAO Co-Chair and diagnosed mother, Karen Ann Whitehead MBE, states: “Every week without awareness and recognition of PAO, leading to delayed diagnosis, is yet another week of suffering for a mother in pain, which also impacts their whole family and community wellbeing.”

Karen further states: “It is over 30 years ago now that I pleaded with more than six different healthcare professionals that something serious was wrong, but was repeatedly dismissed. It took dropping my baby — as my back broke while trying to pick them up — to be investigated and eventually diagnosed. It now breaks my heart that over 30 years later, PAO mums still face the same challenges: a struggling maternity system, not being listened to and a complete lack of patient-focused care. Let’s hope the new Health Plan can ensure our PAO mothers and their families get listened to and their concerns are investigated, not dismissed.”

Personalised Care for Women

In addition to PAO UK, the Royal College of Obstetricians and Gynaecologists (RCOG) also welcomes the fact that the new Government Plan recognises that too many women are not currently receiving the personalised, high-quality care they deserve. However, RCOG expresses concerns that the Plan falls short in pledging to eliminate the current gender health gap and advises, “It’s time for an NHS with all women at its heart,” calling for the Government to re-set the Women’s Health Strategy for England.

The Key Role of Prevention, especially for Osteoporosis

The Royal Osteoporosis Society (ROS) also welcomes the 10-year Health Plan, calling for a comprehensive, strategic approach to osteoporosis that prevents fractures and reduces costs. PAO UK further agrees with prioritising the prevention of fractures — a focus which also aligns with the Government Plan’s commitment to shifting from a model of sickness management to one of prevention, with the goal of raising “healthy life expectancy” for everyone.

PAO UK also notes that the Government Plan’s emphasis on prevention resonates strongly with the charity’s objectives. Pregnancy-associated bone loss and fractures are conditions where early recognition and proactive management can prevent life-changing outcomes. PAO UK hopes that the prevention agenda will explicitly include maternal bone health as part of the wider commitment to improving women’s health and reducing avoidable long-term disability.

Local Care and the Ongoing Need for Specialist Care

While PAO UK welcomes the Plan’s commitment to strengthening local care through a ‘Neighbourhood Health Service’, it cautions that this model must not come at the expense of specialist expertise. For mothers with rare conditions such as PAO, access to clinicians knowledgeable in their disease is often only possible through regional or national Centres of Excellence. PAO UK therefore echoes Rare Disease UK’s call for the Plan to clarify how patients requiring specialist input will be supported within this more localised framework.

Digitization of Health Services

PAO UK recognises the potential of digital transformation to enhance safety and streamline care, but has previously queried the Government’s heavy emphasis on technology without sufficient input from patients and experts. The current move to digitise the Maternity Early Warning System (MEWS), replacing paper-based pregnancy monitoring charts, has previously been queried by PAO mothers, as it does not appear to routinely record key PAO-relevant indicators, including maternal height measurements, which can indicate spinal fractures and aid early diagnosis. It also does not appear to include ongoing pain scores, which, if investigated speedily, could prevent PAO fractures and limit the associated mental and physical healthcare issues. Both height measurement and pain levels were included in the previous paper-based monitoring system. PAO UK does, however, support digital transformation that is premised on meaningful patient and healthcare involvement, as it could enable greater healthcare knowledge, improved systems and transform patient care for PAO mothers.

Looking Forwards

PAO UK will continue to review further details of the Plan and its implementation, including the ongoing Maternity Inquiry. Overall, the organisation welcomes the Health Plan’s ambition to modernise the NHS and improve maternity care. PAO UK hopes this marks an urgently required turning point, one that ensures mothers affected by rare conditions such as PAO are listened to, promptly diagnosed, and supported by a system truly fit for the future.