NHS Eating Disorder Services

Baroness Janke Excerpts

Thursday 29th June 2023 Lords Chamber

[Baroness Janke (LD)]

My Lords, I too thank my noble friend Lady Parminter for securing a debate on an area that is of huge importance yet receives little public attention. I too welcome the Minister to his post.

In looking at the lack of progress on the parliamentary ombudsman’s report, I will highlight the importance of eating disorders in the lives of individuals and families. As the noble Baroness, Lady Wheatcroft, and my noble friend have said, eating disorders can be devastating not just for the individuals themselves but for the families and carers. My own knowledge is also of anorexia and I recognise many of the experiences that they mentioned.

Given the relentless responsibility that it places on families of trying to keep their loved one alive as the disease becomes embedded, parents and carers can feel like prison guards as they rigorously police the behaviour and everyday life of the person for whom they are responsible while trying to negotiate specialist treatment, often where little is available. As my noble friend Lady Parminter said, many families end up travelling huge distances to get specialist treatment for their child. Worse still, that devotion and care may be for someone who has become completely unrecognisable: transformed into a poor, suffering victim who will stop at no subterfuge or deception to achieve their compulsive desire to not eat. As their weight diminishes, the desire to reject food becomes ever stronger and rational argument has no effect whatever.

Treating anorexia early is essential to have any chance of recovery, as has been said, yet the availability of treatment is widely disparate across the country. The Government recognised the increasing number of referrals by allocating £11 million nationwide in 2018-19 yet, despite this, total spending rose by just £1.1 million. Only 15% of CCGs increased their spending in line with the increase in funding. Spending per capita on children’s and young persons’ community eating disorder services continues to vary widely across the country. Median spend was £4 per capita, with seven CCGs reporting a spend of less than £2 per capita. All this is despite the fact that 2019-20 marked the fourth year of the implementation of the access and waiting time standards for children and young people with an eating disorder, with the express object of ending the postcode lottery in services for those disorders. I hope the Minister will tell us what action he is going to take on this.

As has been said, post-pandemic hospital referrals of children and young people under 20 have massively increased. The lack of specialist services available has meant that young people diagnosed have been put into general wards, as has already been said. This is not just poor treatment; it is actually damaging and makes the condition worse.

Even worse, it is being reported that in the light of inadequate specialist services a new definition has been created, SEED, meaning severe and enduring eating disorders. This is reported now as providing grounds for rationing and, in some cases, withdrawing treatment because the patient is not getting well quickly enough. This shows a devastating lack of understanding on the part of medical staff and health providers of how these illnesses progress and factors such as weight loss and starvation affect the patient’s ability to think rationally and be motivated. It is, in effect, blaming the patients for the illness.

As we heard, the recommendations in the ombudsman’s reports have made little progress and in the latest report there is a particular emphasis on the need for political leadership from the Government to ensure that recommendations are taken forward in terms of staff training, improving leadership from the NHS and NHS England, and using the forthcoming serious incident framework to review learning from serious incident investigations. The report highlights that these do not appear to form the basis of learning for future action.

I, too, underline the need for political leadership from the Government. We particularly need a nationwide strategy to include medical and community services working together to provide a co-ordinated specialist approach for the growing numbers of sufferers and to end the postcode lottery. I would also like to see a public health campaign to spread public knowledge and awareness—not just for children and young people’s services but for schools, parents and families—to ensure early recognition and referral to specialist and medical services for sufferers before the disease becomes embedded, intractable and often, tragically, lethal.

There needs to be realistic investment of resources to provide the specialist care needed but also to further develop the understanding of the causes and the potential solutions to this growing, complex area of mental health. People should not be dependent on the devotion and specialism of certain practitioners who have devoted their lives to this; it should be part of training for general medical staff and providers of medical services and not a Cinderella service as far as research is concerned.

The failure to address these issues amounts to negligence, as we have seen from the ombudsman’s reports and the follow-up. It cannot be allowed to continue. I look forward to the Minister’s response.