Opinion: Engage Britain – Why we must be able to critique the NHS

By Dee Montague, Engagement Officer at FTWW

a screengrab from a BBC Breakfast report. Dee, a white woman with dark hair wearing a blue floral dress, sits with the Newport Transporter Bridge in the background. She's not looking at the camera - she's speaking to the reporter who is out of shot.

Earlier this year, FTWW facilitated two focus groups as part of Engage Britain’s community conversations around health and social care. Our conversations were two of 101 held across Great Britain, looking to find out more about people’s positive – and negative – experiences of health and social services. One of our groups focused entirely on endometriosis, and the second had a general ‘women’s health’ focus.

As part of the publicity around Engage Britain’s conversations and subsequent survey results, I was asked to be a case study for the BBC coverage, and was interviewed by Home Affairs Editor, Mark Easton. We talked about how my battle to be diagnosed with endometriosis (which took 23 years) left me suicidal following my second round of NHS gynae appointments and left me feeling “dismissed, disrespected and desperate”.

I paid privately to see a specialist (who I should have been referred to anyway in compliance with NICE guidance), who was gobsmacked that my stage 4 endo could have been missed – and dismissed – for so long.
The conversations FTWW hosted reflected many of the findings of the UK-wide survey, which revealed that:

  •  21% had been forced to go private because NHS treatment was unavailable
  • 25% said waiting times had harmed their mental health
  • 28% felt they had to fight for treatment

Among people from ethnic minorities, 22% said they or a loved one had experienced racism when seeking treatment.

18% of disabled people have experienced ableism when seeking healthcare.

Overall, more than a quarter of those questioned felt their problems were not taken seriously, rising to 45% of women aged 18-34.

I am disappointed that many respected NHS staff on social media have criticised the reports; many urged followers to ignore the coverage, claiming it is a mouthpiece for the UK Conservative Government in their aims to privatise the NHS (you can read more about the controversial Health and Care Bill here).

There are many issues with this.

Firstly, let me emphasise, the vast majority of those surveyed and who took part in conversations do not want the NHS privatised.

Secondly, let’s consider the geography. Nearly every single tweet (and reply) I’ve seen that criticises the study focuses on England only. They talk of how dangerous the current UK Government is to the NHS in England. But what about Wales and Scotland? Here in Wales, health is devolved. Welsh Labour is in charge and yet a similar picture of patient struggles emerges. Nor can we blame Covid19 for all of our (and the NHS’s) woes. As so many reports confirm, the pandemic has shone a light on problems and inequalities that already existed.

As I said in my interview, there are thousands of women across Wales who could tell the same story as I have. Looking at endometriosis alone, we know that it is in crisis in Wales; lack of appropriate research, resources and funding, and a skills gap meaning general gynaecologists are not adequately trained to find and treat the disease.
What’s worse, we have just TWO NHS specialists working in Wales, and their surgical waiting list now exceeds FIVE YEARS. Unlike in England, patients don’t have the right to choose when it comes to their care, meaning they are stuck within a system that is very much broken; for many patients, the healthcare they are receiving in Wales does not comply with NICE endometriosis guidance.

Let’s be clear: endometriosis is just ONE example of where Wales’s women are not receiving adequate – or fair – treatment. There are many more, they existed way before the pandemic hit, and they’re not just down to a struggling NHS. They’re down to historical attitudes and prejudices about ‘women’s health problems’; they’re down to a lack of training on women’s health issues; they’re down to lack of research or investment in conditions predominantly affecting women; they’re down to a whole host of societal issues which we encounter on a daily basis, often far removed from the doctor’s office.

Nevertheless, whilst Wales’s funding comes from Westminster and has no doubt been hit by austerity, when it comes to our health services, the decisions made that have got us here come from Welsh Government and our health boards and we must be able to hold them accountable.

To dismiss and ignore patients’ experiences of discrimination, racism, and ableism, is incredibly harmful. To dismiss those experiences as anti-NHS/pro-government propaganda minimises the very real issues that people have faced and the subsequent trauma they have endured. It patronises them too.

We cannot claim to support racial equality if we dismiss Black and Minority Ethnic patients who bravely speak out about the racism they have encountered in the healthcare system.

We cannot claim to support disability rights if we dismiss the ableism faced by disabled patients.

We cannot ignore the fact that nearly half of young women surveyed felt their problems were not taken seriously.

We cannot claim that everyone who needs NHS care will receive it when these inequalities prevail.

Lack of appropriate funding and resources within the NHS is a huge issue, and we must all do what we can to ensure that NHS services remain free at the point of access. Let’s face it, for those of us (and there are MANY) living with pre-existing chronic illnesses, private healthcare insurance is unattainable. And paying out of pocket for ongoing treatment is largely impossible for those of us who have lost our jobs as a result of ill health.

Dismantling the NHS in favour of private healthcare could not be further from our minds. But that doesn’t mean that we shouldn’t be allowed to raise our voices about harms caused and costs incurred. That doesn’t mean that those in charge of our NHS shouldn’t be listening and working with us to develop solutions.

There is no doubt that the pressure the NHS (across Britain) has been under during the pandemic has been unsustainable, and staff need much more help and support to deal with the horrors they have seen.

We are hugely grateful to NHS staff for their sacrifices and the amazing work they do.

FTWW exists to campaign for health equality and improved healthcare services for women, girls and those assigned female at birth, because many services in Wales unfortunately fall short. For many patients, how they are treated by NHS staff when they try to seek help is problematic. At FTWW, we hear horror stories daily of patients being shouted at, ignored, laughed at, and not taken seriously. Co-production is at the heart of our aims, ensuring that patient voices are included and heard, and that lessons are learned.

As the mantra goes, ‘Nothing about us, without us’. We must be able to talk about issues patients face – and health care professionals must be committed to listening. Nothing can improve when patient voices are routinely dismissed.

Update: On Friday 17th September – World Patient Safety Day – Welsh Government launched the new Quality and Safety Framework for the NHS in Wales (see below). FTWW will be following this with great interest!