Eating Disorders Awareness Week

Paul Farrelly Excerpts

Wednesday 27th February 2019 Westminster Hall

[Paul Farrelly (Newcastle-under-Lyme) (Lab)]

Thank you, Mr Bailey. I congratulate the hon. Member for Angus (Kirstene Hair) on her success in securing this debate during Eating Disorders Awareness Week. I thank Beat, the eating disorders campaign group, for its unstinting efforts on behalf of the more than 1 million sufferers across the UK. After this debate, from 11 o’clock to 3 pm, during the lobby of Parliament, I am hosting a drop-in event with my good friend, the hon. Member for Stafford (Jeremy Lefroy), in room R of Portcullis House; colleagues here and those listening can go there to find out more about Beat’s work.

This debate follows that secured last October by the hon. Member for Bath (Wera Hobhouse), which shows that support for this cause is truly cross-party. We also had a debate on the subject in September with the children’s Minister, the hon. Member for Stratford-on-Avon (Nadhim Zahawi), highlighting the issues for vulnerable children going into adulthood. In that debate, I focused on concerns that regularly pop up in my area of north Staffordshire for young adults suffering from anorexia, bulimia and other eating disorders, which have such devastating effects on them and their families.

The impact on young adults is one example of a core concern of the Parliamentary and Health Service Ombudsman’s groundbreaking 2017 report, which I will focus on again today. This suffering and vulnerability does not stop when children reach the age of 18. However, in my immediate locality—Newcastle-under-Lyme, Stoke-on-Trent and Staffordshire Moorlands, which have a population of well over 600,000 people—the commissioning of specialist support and treatment does stop at the age of 18.

Staffordshire is served by six clinical commissioning groups, with one common accountable officer. The budget for specialist, post-18 eating disorder services in the four CCGs serving the centre, east and south of the county is £428,000 a year, but for the North Staffordshire and Stoke-on-Trent CCGs, it is exactly zero. Sufferers who, up to the age of 18, had been used to specialist support in the community or at in-patient facilities have to rely thereafter on the hard-pressed, overstretched and generalist child and adult mental health teams. It is a postcode lottery—an “unwarranted variation”, in the NHS jargon—that has persisted for far too long, is patently unfair and lets local families down badly.

Of course, the last thing those families and their children want is the publicity that would bring pressure to bear on the CCGs to change course and give them the specialist support that is available just a few miles down the road. Last September, however, after our debate here, one of my constituents, Sarah Pustkowski, was brave enough to speak out publicly about the effects on her.

Sarah is 25 and developed anorexia nervosa when she was 16. She is slowly recovering—touch wood—but her father says that she is not out of the woods yet. Her case shows how long the anomaly in our area has persisted, because her dad first approached me in 2014 when she was 20 to relate what a cliff edge they had fallen off, in terms of specialist support.

Until then, Sarah had access to the excellent Kinver Centre, a hospital in Stafford just down the A34. When discharged, however, all the expert support that the family was used to stopped, because our CCGs failed to commission it. The Kinver Centre can admit people from all over the country, not just the county, but not from north Staffordshire, Stoke-on-Trent or Staffordshire Moorlands, because our CCGs provide no funding. Sarah and her family are not alone.

Since the autumn, we have been working with sufferers, concerned local health professionals and providers, and Beat to resolve the situation. A business case has been drawn up for the two CCGs as part of their annual prioritisation process, which aims at consistent commissioning across the county. The professionals involved are more hopeful than before but, with intense financial pressures on our NHS, I pray that the dawn does not again prove false in the coming weeks.

Something that should help to make the case and, one would hope, to inform and form Government policy, is information as to what happens across the country as a whole. Last October, after our debate here, we asked the new Secretary of State which of the 190-plus CCGs in England also did not provide specialist 18-plus eating disorder services. His written reply stated:

“This information is not held centrally…NHS England does not hold information about all of the specific services commissioned by individual CCGs.”

But specialist in-patient units are commissioned by NHS England, so the response could have been more helpful.

The Secretary of State’s reply went on to say that the Government were investing £150 million in community-based care for eating disorders, which will mean that

“70…new or extended…services are now either open or in development”,

which will benefit

“at least 3,350 children and young people a year”.

We are still, however, at a loss to know precisely where. Perhaps the Minister could write to us with some more details after the debate.

In December, we served freedom of information requests on all 190-plus of England’s CCGs about the full extent of their services and funding. As hon. Members who have done that before know, it is a mammoth exercise that takes quite some following up. Thankfully, only a handful of CCGs did not respond and are being chased, and about 25 swerved the questions and gave little meaningful information, but the overall picture for adults and young adults is certainly better than the situation in North Staffordshire, and no doubt in the areas of many hon. Members present.The majority do provide specialist 18-plus services—in the community, at least.

There is still a glaring hole in the picture of specialist adult in-patient provision, however. Most CCGs defaulted on that question and referred it to our old friends at NHS England. Coming full circle, we formally FOI-ed it, too, in the new year. Under the statutory limits, a reply was due by last Thursday, but despite chasing, none has yet come. It would have been good to have had it by the end of last week to inform our local business case, and it would have been respectful to the families and sufferers for NHS England to have responded before this awareness week.

I am sorry to speak at length about our travails, but the saga demonstrates only too clearly how difficult it is for conscientious campaigners such as Beat, the families and the MPs who support them to lay their hands on the information they need. If it is difficult for us, it is fair to ask how Ministers can draw up effective and informed policy, and make sure that recommendations for improvement, such as those in the Parliamentary and Health Service Ombudsman’s report, are put into practice.

One of the five core recommendations in that report was that

“The Department of Health and NHS England should review the existing quality and availability of adult eating disorder services to achieve parity with child and adolescent services.”

It is that lack of parity, and the progress in reducing it, that we have been so frustratingly trying to get to the bottom of in the last six months. If the Minister has more information, I hope that she will share it with us and, importantly, ensure that NHS England does, too.

[Several hon. Members rose—]

--- Later in debate ---

[Paula Sherriff]

I thank the hon. Gentleman for his intervention. Frankly, a debate would not be complete without an intervention from him. I absolutely agree. When I was speaking to the professional at the Mirfield Free Grammar, she told me that much of what comes through her door relates to eating disorders, crucially in boys as well as girls. Sometimes we continue to stereotype that eating disorders affect only women. The reality is quite different.

As a number of Members have suggested, social media can be a double-edged sword. I will talk about Beat in a moment. Beat does excellent work and has fantastic online resources, as do a number of other mental health charities. However, other sites that we have heard about that encourage people with regard to suicide and their eating disorders can be problematic to say the least.

The Government have made a commitment that, by 2020, 95% of children and young people who are referred with an eating disorder will be seen within one month, or one week if it is considered urgent. That is obviously very welcome, but with 2020 just around the corner I am concerned that, given current workforce and funding pressures, that will be difficult to achieve, or will possibly result in manipulation of waiting time figures. A patient will get a first appointment within the timescale, but any follow-up or effective treatment will still come many months, or even years, after referral. I would be grateful if the Minister would say how it will work in practice.

Although that is all well and good for children and young people, there are still no clear plans for adults with eating disorders. I recently visited a NAViGO service in Grimsby that supports people with eating disorders, and I was struck by how many people who were older than me were experiencing in-patient treatment.

My hon. Friend the Member for Newcastle-under-Lyme (Paul Farrelly) talked about his constituent Sarah. I have a constituent who was diagnosed with an eating disorder at 16. Owing to the severity of her illness, she was sadly admitted to hospital for a lengthy stretch. On her release, she attended fortnightly appointments with an eating disorder specialist. As her recovery was going well, my constituent decided that she would like to take up an offer of a university place in Manchester, because despite her very difficult illness she had achieved the most fantastic A-level results. She saw going to university as a positive step in her healing and as a way of getting on with her life. The local NHS trust that delivers mental health services in my area informed her that she would have to transfer over to mental health services in Manchester.

Neither my constituent nor her family thought too much about that, as it was not raised in such a way that allowed them to foresee any issues. However, five months on, my constituent is still waiting for the handover to be completed and, sadly, during that time she has suffered a serious relapse and is once again looking at in-patient care. I recently attended the all-party parliamentary university group, and we talked about transition when people go to university, and about mental health in general. We need to look at that in some detail.

[Paul Farrelly]

Clearly, the administration in the health services that led to that outcome is of grave concern. It is also concerning when specialist services in a particular area stop for young people when they turn 18. Only those people going away to university or college in areas that provide such services, or those people whose families have a lot of money and can fund treatment privately, have the prospect of change. The people who are left are effectively discriminated against.

[Paula Sherriff]

I thank my hon. Friend for that intervention. I absolutely agree. We had a very interesting discussion at the APPG about whether we could do more pre-screening when people go to university. We must also remember those in further education, not just those in higher education.

I ask the Minister whether what happened to my constituent would have happened had she been suffering from a serious physical condition. Earlier, a colleague made an analogy with cancer—“Your cancer is only at stage 1; we’re not going to treat you until it becomes more advanced.” As we all know, eating disorders carry the highest mortality rate of any mental illness; yet this young lady has been left to suffer, in a new city, away from family and friends and without any support network. We all have to ask ourselves how on earth that was allowed to happen.

I commend the fantastic work being done to raise awareness of eating disorders and to support sufferers, and crucially their carers and families, by the charity Beat, some of whose representatives are in the Gallery. They work relentlessly to battle against the stigma of this dreadful disease, and to push for better access to services and treatments. When my office spoke to them about the case of my constituent, they said that sadly it was very typical of the stories that they hear every day on their helpline. How many families are going through the same mental torture day after day while waiting for that elusive appointment confirmation to drop through their letter box?

With no specific waiting time targets for adults with eating disorders and poorly funded mental health services, many overstretched mental health trusts are unable to put the necessary resources into those vital services, and treatment availability has become a hideous postcode lottery, as my hon. Friend the Member for Newcastle-under-Lyme highlighted. Service access and levels of funding vary widely from one area to the next.

Furthermore, there is a huge disparity between access to adult services and to those for children and young people, with adults on average waiting twice as long. The eating disorder charity Beat has had a huge rise in calls to its helpline over the last year. In 2017-18, Beat staff helped 17,000 people, and they estimate that by the end of 2018-19 they will have helped more than 30,000. It is commendable that they managed that increase in demand so well, and I know that with more funding they could help even more people.

In October 2018, following an eating disorder storyline, which Beat had been very involved in helping with, on the popular teenage soap “Hollyoaks”, calls to Beat’s helpline spiked to more than double those in any previous month. That highlights the need to raise awareness about eating disorders and, crucially, to quash the stereotypes and stigmas so that more people know that they can seek help earlier. Reportedly, it could take an adult with an eating disorder more than two years before they realise that they have an issue, and up to another two years to seek help. More needs to be done to increase awareness and access to treatments.

Beat recently undertook some research into eating disorder stereotypes. When people think of eating disorders they often think of young, white women, but that is a popular misconception. The reality is much more complex. More adults suffer from eating disorders than young people, and the number of male sufferers increases year on year, with people who identify as LGBT+ at significantly higher risk. Stereotypes prevent people from seeking and receiving medical treatment in the earlier stages, which, in turn, makes it harder for people to recover.

I am grateful that the hon. Member for East Kilbride, Strathaven and Lesmahagow (Dr Cameron) raised over-eating. When we think of eating disorders, we often think of anorexia or bulimia. It is important that we consider the full spectrum of disorders. Beat’s research also found that people from black, Asian and minority ethnic and less affluent backgrounds would feel less confident in seeking help from a health professional for an eating disorder. That stigmatisation and fear of speaking out can have far reaching and dangerous consequences.

We also need to work to ensure better training for those on the frontline. The hon. Member for Westmorland and Lonsdale (Tim Farron) made an important point about training for those in health professions so that they can better recognise and support those who present with eating disorders.

Another constituent of mine waited more than two years to be seen by a psychiatrist for depression and anxiety. During that time, sadly, she also developed an eating disorder. She was consuming less than 700 calories a day and avoiding any foods with even a trace of fat, and her weight had plummeted over a period of six months, but at her first psychiatric appointment she was told that she was not underweight enough to be considered to have a serious eating disorder. At her second appointment, the psychiatrist weighed her and congratulated her on her increased weight and body mass index. As hon. Members can imagine, that was the last thing that she wanted to hear. The psychological effect set her recovery back by weeks.

Sadly, that was not an isolated incident. There are many fantastic people working on the frontline of our health services, but there is also a minority who would hugely benefit from extra awareness training in what an eating disorder looks like, how best to treat it and where to refer patients for treatment.

I know the Minister well and am satisfied that she has huge compassion in the area, but equally I hope that she has listened to the points raised in this debate and will press the Government to put eating disorders higher up the agenda, make promises and set targets that will ultimately save the lives of sufferers. She will have my full support in doing so.