Paediatric Continence Forum
Political and Parliamentary Monitoring
Week Commencing 30th July 2018

Niall Dickson, Co-Chair of the Brexit Health Alliance, has said that making good preparations for Brexit is the difference between “life and death” for many patients. In a week in which the Government has been forced to announce that it plans to stockpile medicines, and even fly-in some drugs, the Alliance, which brings together the NHS, medical research industry, and public health organisations, said the Government should be prepared to store up to six weeks’ worth of supplies.

It has now been announced that formal engagement between the pharmaceutical industry and the Government will begin in September, but the Department of Health and Social Care has not yet published detailed outlines. Some drug companies, including Sanofi and Novartis, are already increasing stocks by four weeks in case of disruption in the event of a ‘no deal’.

Senior figures in the pharmaceutical industry are said to be concerned that any stockpiling or short planning period could create “serious issues” and an increase the costs of drugs, as manufacturers cannot guarantee getting hold of the raw materials needed to create the extra stock required. It is not uncommon for pharmaceutical companies to schedule the manufacturing processes a year ahead to guarantee supply.

However, in a further twist, a it was revealed that unless the EU waives regulations regarding how market-ready drugs can be stored, then the UK’s ability to stockpile could be severely hampered. Mark Thompson, Chief Executive of the Association of the British Pharmaceutical Industry, added that the only way to ensure drugs got to patients in the long term was for the UK and the EU to come to an agreement on recognising each other’s medical safety standards. The EU has said that if the UK leaves the union without an agreement in place, there is a distinct possibility that medicines being exported and imported may have to be ‘batch tested’. However, others have highlighted that a ‘no deal’ scenario would simply mean the UK and EU’s relationship reverting to World Trade Organisation terms, with the ability to still import and export medication by agreement.

Whilst it is unclear whether the stockpiling measures would extend to pads or continence devices, there is a concern that some drugs used to treat continence issues could find themselves being stored for essential-only use if the UK and EU can find no common agreement.

• ‘Changing Places’ data released
• New report on improving nursing and continence care highlights need for specialised treatment
• NHS in the middle of ‘summer crisis’

New ‘Changing Places’ data released
New research by the Changes Places Consortium has revealed that just 12 railways stations, and 17 pubs, restaurants and cafes across the whole of the UK have official Changing Places toilets. This news comes just a month after we reported that Paula Sherriff, MP for Dewsbury and Shadow Minister for Mental Health, was putting forward the Changing Places Bill in order to ensure every large building has easily-accessible facilities.

The Consortium reports how disabled people regularly face the uncomfortable choice of not going out, not using trains, or lying down on dirty toilet floors in order to be changed. Fully accessible toilets are needed by more than a quarter of a million people across the UK, yet some of the country’s largest towns do not have any registered. Changing Places toilets are bigger than standards accessible ones, and are used by people with severe disabilities. They often have additional benches for adults to get changed, and some may even contain a harness or brace for assistance.

Having access to Changing Places toilets increases independence and improves quality of life. Without these facilities, disabled people can feel isolated, forcing some to turn to extreme measures. In one reported case, an individual underwent surgery to have a suprapubic catheter inserted, after experiencing difficulty and frustration finding toilet facilities.

Whilst it is unclear whether the Government in Westminster will support Paula Sherriff’s proposals for more Changing Places toilets in large buildings and public spaces, the Scottish Government has already gone one step further. Kevin Stewart MSP, Minister for Local Government and Housing, recently wrote to the charity PAMIS (Promoting A More Inclusive Society) to confirm that he intends to introduce Changing Places toilets as a compulsory element of Scottish building regulations. This will be of great interest to PCF members, many of whom meet young people and their families who struggle with day-to-day activities because they cannot gain access to the facilities they need.

Whitehouse will continue to monitor the Government’s plans for introducing Changing Places legislation, as well as any local plans to improve provision for people with disabilities.

New research published in to improving nurse engagement in continence care
An international study of nursing standards has identified as key the need to improve nurse engagement in continence care. Published in ‘Nursing: Research and Reviews’, the article outlines the environmental factors which prevent nurses from making positive interventions in care.

The report said that outdated attitudes and a lack of basic understanding of continence issues limits nurses’ engagement in continence care; whilst it was also found that
personal issues, including a lack of knowledge on the issue, as well as organizational concerns, including a failure to make continence issues a priority, mean there are often delays in ensuring those with continence complaints get the care they need. One way of improving care, according to the report, is by improving access to specialised nursing and services, ensuring there is a clear pathway of care and thus reducing the number of repeat referrals.

The news that additional specialist care is key to improving nurse engagement in continence care was reflected in the new Excellence in Continence Care guidance published at the end of July. The guidance outlines that good care includes ensuring “specialist diagnostics and evidence-based treatments” with ‘red warning flags’ in place to ensure that those with the most obvious and concerning symptoms of continence issues can undergo assessment.

This new report will interest PCF members as it further supports the themes of the NICE-accredited Pediatric Continence Commissioning Guide, which the PCF is encouraging all CCGs and Health Bards to adopt. By creating a single ‘under one roof’ service, young people are more likely to get the specialist treatment they need in a timely fashion.

Whitehouse will continue to monitor the implementation of the new Excellence in Continence Care guidance, and its uptake by local authorities.

NHS summer crisis to become the new norm
The increase in admissions because of recent hot weather, as well as reduction in staffing numbers and the concern over Brexit has led to a ‘summer crisis’ in the NHS, with claims the increased pressure could become the new norm as the population continues to age and recruitment levels remain stubbornly low.

It was recently reported that there had been an increase in admissions, primarily of the very young and old, related to the hot weather. It is not now uncommon to find hospitals almost constantly ‘borrowing’ resources from other departments in order to support A&E wards and, in some areas, the extra admissions are leading to delays for patients requiring planned operations.

More worryingly, the increased pressure is being felt at a time when morale amongst staff in the NHS is at record lows, with the number of vacancies in the health service continuing to rise, and fears of the impact of Brexit remaining unaddressed. Writing today, one doctor said that high burnout rates and low morale were having a direct – and often negative – impact on patient care. New Health & Social Care Secretary, Matt Hancock, has cited NHS workforce as one of his key priorities in the role and has said that he will seek to raise morale amongst NHS staff.

These challenges are compounded by Brexit concerns. Four in five doctors believe that the NHS is at risk of collapsing after Brexit, with a brain drain of European NHS staff deepening the recruitment crisis. The survey, commissioned by the London School of Hygiene and Tropical Medicine, found the areas of health care most vulnerable to a reduction in staff levels included cancer treatment.

The news that the NHS appears to be undergoing a ‘summer crisis’ may not shock or surprise some members of the PCF, however it will be of interest that the constant need to have doctors work in A&E rather than in their own departments is causing delays in diagnosis and treatment for other patients.

The PCF will continue to monitor which NHS Trusts have the longest delays, and whether the Government will make an official statement on the increased pressure.