Introduction
Before I started working at The Pad Project UK, I was honoured to be invited to attend the All-Party Parliamentary Group (APPG) on Continence Care meeting held on Monday 28th November at the Palace of Westminster. As someone working in the area and having lived experience of the condition.
To the un-initiated, APPGs are in the words of the UK Parliament ‘Informal cross-party groups that have no official status within Parliament. They are run by and for Members of the Commons and Lords, though many choose to involve individuals and organisations from outside Parliament in their administration and activities’.
They offer a space to bring people together to discuss a particular topic with the aim of raising the profile of the issue and bringing it to the attention of politicians and policy makers. In fact, there are currently hundreds of different ones registered. In recent years, APPGs have received negative attention for being seen as poorly regulated platforms for lobbying Parliament, with the potential of big business and even foreign governments to gain unfair influence on UK policy.
Although there is no doubt that some groups need further scrutiny, especially ones closely linked to industry. Many have also been a force for good, offering a great way to enable individuals and charities to get their voices heard. There are many registered APPGs and in the health sector for example, there are ones for Diabetes, Obesity, Fertility, and Mental Health, to name just a few.
Visiting the Palace of Westminster
Since I last visited the Commons, the security has certainly become tighter. With a much larger airport style system in place. But in view of the terror related incidents that have occurred in and around Westminster in recent years, that’s not surprising. But like many people, I never find this any easier to navigate. Whether that’s remembering to empty my pockets, take my belt off, or reminding security staff that I may set off the metal detectors due to my hip replacement. And of course, living with a hidden disability, these situations are never stress free. For example, being incontinent I always carry spare pads with me, in a laptop style bag, and get embarrassed when my bags are searched. However, this time they seemed to be more interested in the small number of ‘The Pad Project UK’ pamphlets I’d brought with me. Enquiring if they were political in nature, which I found ironic, considering I was entering the House of Commons. Fortunately, I had my PA Gemma with me, who helped me keep on top of the situation and not get too stressed.
We then walked through Westminster Hall, where the Queen lay in state in September, and paused for a moment by the spot which is marked by a plaque on the floor. This was a quiet and poignant moment in an otherwise hectic dash to get to the meeting.
As we were slightly early for the meeting, we had to wait in the lobby before going to the Terrace Pavilion. And living with continence difficulties, you are always scouting for toilets, and we decided to go and find one before the meeting started. After consulting one of the security personnel, we discovered that this meant having to retrace our steps and heading back towards the shop. Yes, they do have one, which we visited after the meeting and I’m now a proud owner of a House of Commons pencil and tote bag! These days I tend to use Disabled Toilets, as they are easier to change a pad in and have bins to dispose of them, but more of that later. But, as so often there was only one toilet, which we had to wait to use. Although, this proved a wise move, as we later discovered that the toilets in the section of the building, we were heading towards were ‘out of order’ and had been for some time. Highlighting some of the difficulties that the restorers of this Victorian High Gothic building face, in their task to bring the Palace of Westminster up to date. It also neatly illustrated the difficulties faced by those living with incontinence, who need easy access to toilets, and why so many people with the condition either stay at home or are very anxious about going out.
The APPG on Continence Care Meeting
The meeting itself was held in what can only be described as a glorified Wedding style tent on the Terrace at Westminster. Although the views of The Thames were amazing, especially as darkness descended and all the lights along the riverbank light up the water.
The event was extremely well attended, and made the tent feel rather crowded at times, and reflected the fact that this was the first face-to-face meeting of the APPG since the Covid Pandemic began in 2020. Although it was a cause of celebration that members could meet again, it was also tinged with sadness as Baroness Greengross who had successfully co-chaired the APPG on Continence Care for many years, passed away in June 2022. And the remaining chair, Rosie Cooper MP, had also announced that she was standing down as an MP in order to pursue new opportunities outside the Commons, after a difficult period. And Rosie gave a heartful tribute and thanks, at the start of the meeting to her fellow co-chair.
The Speakers at the APPG Meeting
There was an interesting mix of speakers at the event, from NHS staff and healthcare academics, through to those living with continence difficulties.
The first speaker, a colorectal surgeon talked about The Pelvic Floor Report published in 2021 and was concerned that funding and staffing levels in the NHS would make its recommendations difficult to implement. The next speaker, a senior continence researcher from Bristol, Nikki Cotterill, discussed the ‘Patient Voice’ project and the CONfidence App. The former, explored the personal experiences and views of those living with incontinence, and particularly the many difficulties and stigma people face. The latter is a new App designed to help individuals with incontinence by offering advice and management strategies and is backed by the NHS. The third speaker, Jonathon was a prostate cancer survivor who talked eloquently about living with incontinence. He also promoted the ‘Bins for Boys’ campaign, aiming to highlight the lack of sanitary bins in men’s toilets, and the difficulties that individuals face when trying to dispose of their products. The final presentation of this session was given by two NHS nurses from Leicester hospitals, who had instigated a research project and campaign to offer decaffeinated drinks to patients, which helped to reduce falls and to highlight the bladder problems that caffeine can cause. There was then a short break for refreshments.
The next session began with an excellent talk by Katie Featherstone and her colleague Karen Logan on their NIHR funded project looking at the experience of dementia patients in hospital and how their toileting and continence care is managed. This research received a lot of coverage in the press over the Summer, because it highlighted the widespread practice of putting patients into pads, whether they were incontinent or not, and the tendency of staff on busy wards to encourage them to use them. I have to admit that I’m biased here, because Katie is a friend and old colleague of mine from Cardiff University, and I was on the steering committee for this research. But it is still shocking and a great example of the power of research to highlight hidden issues in healthcare.
The next talk was equally hard hitting and emotive. And was given by an inspiring lady who gave a ‘warts and all’ account of living with bowel incontinence following cancer treatment. Victoria made it clear that she did not like to be called brave, when discussing this issue, but wanted to show the reality of the situation. This brought a lot of emotions to the surface for me, as I also struggle with my bowels, and I am very familiar with many of the issues Victoria talked about.
The final presentation was given by Clare Gerarda from the Royal College of GPs, who nervously joked about her profession not being the most popular with the public at the moment, due to the widespread negative publicity around access to primary care services. However, I have heard and read some of Clare’s comments on life as a GP and know that she is someone that deeply cares about her profession and patients and has great humility. And this talk was no exception, in which she acknowledged that she had underestimated the impact of the issue in the past, and that GPs could probably do more. Clare concluded with heartfelt thanks to Rosie Cooper MP, for her great work on the APPG on Continence Care.
With concluding comments coming from Rosie Cooper herself, who thanked the speakers and audience for attending, and particularly the two lived experience participants. She spoke about the great work that the APPG had achieved in raising awareness of this issue and promised that along with the secretariate she would do her best to find new champions in the Commons and the Lords to carry this forward. And ended by encouraging everyone to make the most of the networking opportunity provided by the APPG meeting.
The Take Home Messages
The meeting was a little downbeat, reflecting the difficult times we are living under, highlighting the strains that the NHS and Social Care service are under in terms of funding and staffing levels. Many of the speakers also described continence care as something of a ‘Cinderella service’ that deserved greater recognition due to the large number of people with incontinence and its significant impact on people’s lives. They also highlighted the stigma that still surrounds the condition and need for more open dialogue around the issue to help raise awareness, as well as the importance of continuing to lobby for better services in this area. With an audience member highlighting that many of these issues were not new and had been raised before and asking for advice on the most effective ways to continue to lobby for change.
The Pad Project UK
At the break and end of the meeting, we had the opportunity to network with fellow guests, and this gave us the opportunity to highlight the work of the new charity, The Pad Project UK, which aims to collect unwanted hygiene products and equipment, and redistribute them to those in need. To this end, we managed to talk to a range of stakeholders, including pad manufacturers, other continence industry representatives, NHS workers, healthcare academics, researchers, expert patients, health reporters, various charity members, and policy makers.
Afterwards
It was a worthwhile event, and we hope to attend future APPG meetings. London in the evening after dark is always exciting, particularly in the run up to Christmas, with all the Christmas lights. And we had a pleasant walk back to Great Portland Street Tube station, where we’d left our car in a nearby Car Park. Walking up Whitehall past Number 10 and catching a glimpse of their Christmas tree through the huge security gates, and on through Trafalgar Square and up Shaftsbury Avenue, and eventually Tottenham Court Road. By the end of the day, we were pretty exhausted, but went home happy.
