NHS: Patients with Allergies

Baroness Keeley Excerpts
Thursday 12th December 2024

(1 week, 3 days ago)

Grand Committee
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Baroness Keeley Portrait Baroness Keeley (Lab)
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My Lords, it is a pleasure to speak in this short debate on this important subject. I congratulate my noble friend Lady Ramsey of Wall Heath on obtaining the debate and on her excellent opening speech, and I am very pleased to follow my noble friend Lord Mendelsohn.

It is a surprising fact that one in three people in the UK live with allergies—perhaps it will not surprise any of us in the Room now, having heard the opening speeches. I am one of those 21 million people, as I have a number of food allergies or intolerances, which have increased over the last 30 years. My allergies are not as serious as the ones that cause an anaphylactic reaction, but they do affect day-to-day living, as I have to avoid wheat gluten, rich dairy products and—at this time of year perhaps the most difficult exclusion—chocolate.

Avoiding allergens in products at home has become a little easier. Thirty years ago. it was very hard to avoid wheat, which is often in many products with ingredients labelled as starch but which is often wheat starch. I learned to cook with different flours, as I am sure every parent with a child with allergy learns to do, but they often had to be bought at health food shops. Now, large supermarkets have a section for “free from” or “made without” products and stock a range of gluten-free flours. At this point, it is worth explaining to those who are not in this world that these products are very expensive indeed. Small loaves cost more than £3, and many of the flour products are very expensive, so the point made about low-income families is very pertinent.

However, the most difficult aspect of day-to-day living with allergies is avoiding allergens in food when eating out, including at work and at school, buying food when travelling or on holiday and buying food from takeaways, because in that situation you have to rely on a shop selling food knowing which ingredients are in the products. It relies on chefs, kitchen staff, waiters and baristas playing their part in faithfully recording requests to avoid allergens and passing that information on to the staff preparing food or drinks, but that does not always happen.

An article in the Times highlighted that more than 50 young people, including a child of nine, have died in less than a decade as a result of severe allergic reactions to food or drinks bought in restaurants, cafés, shops or schools. We have heard in a number of colleagues’ speeches about Natasha Ednan-Laperouse, who died aged 15 after eating a Pret a Manger sandwich which contained sesame. As we have heard, her parents have campaigned on the issues in her case and been told of many deaths of other young people—almost all of which, it seems, were avoidable. They were shocked to hear of so many avoidable deaths. Her father Nadim said:

“When Natasha was growing up we didn’t know any other parents whose children were food-allergic and she was the only one in her primary and secondary school … Then we received thousands of letters when it became public from people who said, ‘We fear every day what happened to your child will happen to ours’”.


He also said that the common themes in the stories they were told by parents included a lack of understanding among catering staff about allergies and how serious they can be, or a human error meaning that they were given the wrong food product.

As we have heard, Natasha’s parents’ campaigns have been focused on two areas: Natasha’s law, an important measure that came into force in 2021, tightening legislation to force outlets that package their own food products on-site to provide a full list of ingredients on the labels, with any of the top 14 allergens, including milk, nuts, eggs and sesame, highlighted; and, as we have heard, the Natasha Allergy Research Foundation is funding a £2.7 million immunotherapy trial across six hospitals that aims to gradually desensitise patients to their allergens through everyday foods. On the number of cases, it is worth saying that, as an MP, I had two local cases within one year of young people who tragically died after eating food containing allergens, despite in both cases the young person or their parents describing their allergies and being assured by waiters and serving staff that the food they were eating was safe for them.

Allergy UK tells us in its excellent briefing that 62% of people with allergies say it affects all aspects of their lives, and I am sure all of us who are contributing here can appreciate that, but among adults with anaphylaxis 40% experience post-traumatic stress disorder because, as my noble friend Lady Ramsey said earlier, it strikes terror in parents’ hearts. Allergy UK also tells us that, despite hospital admissions for people with allergies being 615% up in the last 20 years and rising sharply among children, we have only 40 specialist allergists in this country. As we have heard, specialist services are not well spread across the country; the pattern is distorted. The NHS underutilises preventive strategies such as early allergen introduction; and treatments like immunotherapy have been rejected due to perceptions of the high short-term cost, despite the fact that immunotherapy drastically reduces the high cost of future emergency admissions and hospitalisations.

I join Allergy UK in hoping that the Labour Government may be more receptive to preventive strategies, and I would be grateful if the Minister could give us an update on any possible new preventive strategies for allergies. I also ask my noble friend to look at the call from Allergy UK for the Government to introduce a specialist allergy nurse and dietician at primary care level within every integrated system. With 21 million people living with allergies and so many avoidable deaths of young people and hospitalisations due to allergens, I hope the Government can agree to look at the gaps in allergy management within primary care.

Physician and Anaesthetist Associate Roles: Review

Baroness Keeley Excerpts
Thursday 5th December 2024

(2 weeks, 3 days ago)

Lords Chamber
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Baroness Keeley Portrait Baroness Keeley (Lab)
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My Lords, I welcome the opportunity to speak in this short debate on the review of the physician associate and anaesthetist associate roles and what actions the Government plan. I congratulate the noble Baroness, Lady Bennett of Manor Castle, on the debate and her opening speech. I will start by focusing on the way in which physician associates are used in the NHS and some of the consequences this has had.

In July 2023 I led an Adjournment debate in the Commons on the use of physician associates in the NHS. I did so to raise issues in the case of Emily Chesterton, the daughter of my former constituents Marion and Brendan Chesterton. Emily tragically died of a pulmonary embolism, aged 30, after seeing the same physician associate twice at her GP practice and being misdiagnosed.

The circumstances of Emily’s death were investigated by a coroner in March 2023. Messages from Emily examined at the inquest evidence Emily’s belief that she was seeing a doctor, that the appointments with the physician associate were short and that Emily was not examined fully. The conclusion of the coroner was:

“Emily Chesterton … attended her general practitioner surgery … with calf pain and shortness of breath, and was seen by the same physician associate on both occasions. She should have been immediately referred to a hospital emergency unit. If she had been on either occasion, the likelihood is that she would have been treated for pulmonary embolism and would have survived”.


Crucially, the physician associate did not seek medical advice after seeing a patient who had presented twice in one week with significant risk factors for pulmonary embolism, and she sent Emily home without consulting a doctor about her symptoms.

I said in that Commons debate that Emily’s case raises serious questions about the wider use of physician associates in the NHS. In particular, it raises questions about allowing physician associates to carry out unsupervised one-to-one consultations with undifferentiated patients in general practice. PAs are a dependent role; they are meant to be under the supervision of a designated medical practitioner, but that does not appear to have been the case with the lack of supervision that occurred in the case of Emily Chesterton.

The GP practice later raised concerns about the physician associate’s knowledge and understanding of what investigations she should perform on a patient presenting with those symptoms, about her ability to recognise an unwell patient and escalate those concerns to a doctor, and about her overconfidence and lack of insight into the limitations of her own clinical knowledge and practice.

Since I raised Emily Chesterton’s case, my fears about these roles have increased. There have been other deaths involving PAs. Susan Pollitt died after a drain was mistakenly left in her abdomen for 21 hours by a PA. The inquest concluded that her death in Royal Oldham Hospital in July 2023 had been caused by an

“unnecessary medical procedure contributed to by neglect”.

The Northern Care Alliance NHS Foundation Trust, which runs the Royal Oldham, found that Mrs Pollitt would have survived had the drain been removed earlier.

As we have heard, there are also examples of PAs taking on roles that are far too complex for their experience and knowledge. Alder Hey Children’s Hospital has now admitted that, from 2019 to 2023, a PA worked in a role that involved child sexual abuse medicals. Alder Hey had originally denied that PAs were being used in its paediatric sexual referral centre, which is for children under 16 who have experienced sexual abuse.

Dr Matt Kneale, former chair of the Doctors’ Association, said

“This is flagrantly unsafe. I have no confidence that those cases have been assessed to the same competence of a senior paediatric doctor. Children deserve better”.


Alder Hey later admitted that it stopped deploying a PA within its safeguarding team after concerns were raised by the Crown Prosecution Service and the police about relying on the evidence of a PA in court cases.

The Royal College of Paediatrics and Child Health has just published a survey of the experience of paediatricians working with PAs, with 2,200 responses. The survey reported the following safety issues in the work of PAs: misdiagnosis, 63%; miscommunication, 58%; failure to escalate deterioration, 48%; undetected deterioration, 23%; and ordering ionising radiation—which PAs are not allowed to do—9%. The RCPCH survey also reported that 72% of paediatricians with experience of working with a PA believe that their recruitment should be halted.

There are many more examples where patient safety is seen to be endangered by the way in which PAs and AAs are being used in the NHS. This is not helped by seeing a number of posts on social media with PAs videoing themselves, their patients and their clinical settings just to make posts on TikTok or other social media. Concerned consultants who highlighted these inappropriate videos to the press have said that PAs are coming very close to the line of professional misconduct by making these videos.

The new Government have inherited what is effectively a Wild West in medical care, because a new medical role was brought in without regulation, with only voluntary registration and no national scope of practice for PAs and AAs. GP members of the BMA have voted in favour of stopping hiring PAs in general practice and phasing out the PA role. They also stated that the role of PA is inadequately trained to manage undifferentiated patients and that there should be an immediate moratorium on such consultations. The medical royal colleges, as we have heard in this debate, are making their strength of feeling heard on these safety issues. This was recently summarised by Professor Martin McKee in an article in the BMJ.

As I mentioned, the Royal College of Paediatrics and Child Health found substantial safety concerns with PAs working in paediatric settings. The Royal College of GPs has agreed to oppose the role of PAs working in general practice, following a consultation of its members.

The Royal College of Physicians of London is now advocating for a limit to the rollout of the PA role, following a survey of its members. Its sister royal college in Edinburgh has called for a delay in implementation

“until clear nationally agreed scope and ceiling of practice protocols are in place and clear plans regarding post-registration training and assessment of PAs are defined”.

The Royal College of Surgeons has also expressed concerns, including the risk that the expansion of these roles could undermine the roles of surgical care practitioners, surgical first assistants and advanced nurse practitioners. As we have heard, the Royal College of Anaesthetists, after noting concerns about the current use of AAs, has called for a pause in their recruitment.

The Royal College of Radiologists says it has

“no plans to bring PAs into the College and we do not anticipate a significant expansion of the role within our specialties”.

The Royal College of Emergency Medicine also

“does not currently support the expansion of the Physician Associate workforce in Emergency Medicine”,

again supported by a member survey expressing widespread concern. Now, as we have heard, the Universities of Chester and Portsmouth have halted recruitment to their PA courses for 2025, and the University of Leeds no longer lists the course on its website.

On announcing the Leng review, Secretary of State Wes Streeting said that

“there are legitimate concerns over transparency for patients, scope of practice and the substituting of doctors”.

I agree.

I believe the issues that need to be tackled are these. We need to focus on the unsafe substitution of physician associates in what should be doctor-only roles and rotas, and we should put a stop to that substitution while the Leng review is in progress. We need to accept that it is time to pause the recruitment of PA and AA roles and to halt the expansion of their numbers, particularly until after the Leng review reports, and we should take action, as we have heard, so that PAs and AAs in existing roles are now given the opportunity to retrain into other roles.

In the interim, I hope we can accept that there must be proper regulation of PAs and AAs. They must work within a national scope of practice agreed with the royal colleges. As a first step, as we have heard, the BMA’s safe scope of practice could be adopted.

After the tragic deaths, such as those of Emily Chesterton and Susan Pollitt, we must also hear the voices of patients and the public. Do people want these roles, or would they rather see a doctor?

I end with a quote that Emily’s mother, Marion Chesterton, sent to me. She said:

“We hope that, for all our sakes, precise, thorough and true regulation of PAs will end the chaos, confusion, vagueness and potential danger to patients. We pray for clarity, honesty and co-operation. If our daughter’s life means anything, please, sort out this sorry mess. No more Emilys”.

Mental Health Bill [HL]

Baroness Keeley Excerpts
2nd reading
Monday 25th November 2024

(3 weeks, 6 days ago)

Lords Chamber
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Baroness Keeley Portrait Baroness Keeley (Lab)
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My Lords, I am glad to take part in this debate in your Lordships’ House, after four years as a shadow Minister for Mental Health and six years on the Health Select Committee in the Commons.

In welcoming this Second Reading, I will speak about dealing with the inappropriate detention of autistic people and people with learning disabilities in mental health hospitals. Noble Lords, including those who served on the Joint Committee on the draft Mental Health Bill, understand that too many autistic people and people with learning disabilities have been detained in inappropriate facilities and for far too long. But we, as politicians and legislators, have not made the changes needed to stop this.

The Winterbourne View scandal and a series of other scandals since 2010 have shown abusive treatment meted out to autistic people and people with learning disabilities detained in inappropriate units. In 2011, following the shocking revelations made by journalists of the abuse to residents detained in Winterbourne View, which was rightly described as “torture”, the then Prime Minister pledged to close all inappropriate in-patient units by 2014. That did not happen. Since then, successive Governments have also committed to targets to reduce the number of autistic people and people with learning disabilities in in-patient settings and to prioritise housing and support in the community for those individuals. These targets have all been missed.

In 2021, the Commons Health and Social Care Select Committee, of which I was a member, completed an inquiry into this treatment. Commenting on the missed and delayed policy targets, the inquiry report suggested that “a more radical approach” was needed to unlock community provision for this group of people. Now there is a chance for reform but there are widespread concerns to raise with my noble friend the Minister that the measures in the Mental Health Bill will not be enough in themselves. While it is welcome that the Bill makes it harder to detain a person under the Mental Health Act on the grounds of autism or learning disability, there are widespread concerns, as we heard in this debate, that this could lead to people being held under alternative routes, including the Mental Capacity Act 2005 deprivation of liberty safeguards. We must guard against that happening.

In many cases, autistic people and people with learning disabilities are not being detained just because of the legal framework they are under. They get stuck for years in mental health hospitals because of the lack of support for them in the community. In too many cases, discharge planning is repeatedly delayed because those responsible see the needs involved as too complex or feel that there are no suitable care providers. I will mention two cases to illustrate this: a young autistic woman called Bethany, and Tony Hickmott.

When I first raised Bethany’s case in the Commons, she was a 17 year-old autistic woman with extreme anxiety, kept in seclusion in St Andrew’s hospital, Northamptonshire. In a cell-like room, she was fed through a hatch in a metal door. When her father Jeremy visited, he had to kneel at the hatch in the door to speak to her. Bethany was detained and held in seclusion despite an assessment that the hospital setting that she was in could not meet her needs and a recommendation that she should be moved to a community residential setting with high support.

The lack of funding for support in the community was clearly a factor. The Walsall Council officer responsible for her placement told Bethany’s father that her care had already cost the council £1.2 million. “To be frank,” the officer said to him, “Walsall could do with a breather”. Moving Bethany to a community setting would involve her local council paying £100,000 to £200,000 a year from the adult social care budget, instead of leaving the NHS to pay the much higher bill, which was £676,000 a year. It seems that Bethany was being held in isolation so that the local council responsible did not have to pay her costs, but the very high costs of her detention were then borne by NHS England.

I raised Bethany’s case numerous times in the Commons and she was at last discharged to live in the community. Fast forward seven years and her father talks about what a happy life his daughter now has, in her own property, with good support from a wonderful care team.

The outcome has not been as positive for Tony Hickmott, an autistic man with learning disabilities. In 2022, Tony had spent 21 years in a secure assessment and treatment unit and it looked as if he could finally move back to his hometown of Brighton, close to his parents Pam and Roy.

Tony had stopped meeting the criteria for being detained in a psychiatric hospital in 2013, but it was ruled that he could not be discharged from there because a suitable community placement could not be found for him. His parents applied to the Court of Protection in 2019 and, after a number of hearings, the judge ruled that Tony should be discharged from hospital to live in a specially renovated house with care from a brought-in provider.

This should have been a happy ending too, but it was not. Reports describe that Tony is now effectively barricaded into the bedroom, with the care staff in his home operating the house like a seclusion room. Tony’s parents, now in their 80s, are prohibited from taking him out into the community. He is held under the deprivation of liberty safeguards. I hope that Tony Hickmott’s care provision can be improved.

Much could have been done by Governments over the last 12 years to tackle this issue of inappropriate detention. The new Government now have the chance to change this. First, we must act to prevent new inappropriate admissions of autistic people and people with learning disabilities. Secondly, we must act to enable the discharge of the 2,000 autistic people and people with learning disabilities detained inappropriately in mental health units.

As we have heard in this debate, the average length of detention for this group is 5.4 years, with 355 people detained for more than 10 years. Mencap has estimated the cost of this care in inappropriate units for this group as £534 million a year. Detentions are often, as we have heard, far away from family and friends, with alarming reports of people from this group being overmedicalised, subject to physical restraint and shut away in isolation. All this is as traumatic for those detained as it is devastating for their families. As Mencap has said, its findings on the staggering cost of institutional care show that this is

“an appalling waste of public money on the wrong type of care”.

I hope that there is now a will to change this.

As I mentioned, there is first the issue of ensuring no new placements of autistic people and people with learning disabilities in those inappropriate mental health units. The Commons Select Committee inquiry report made recommendations on how this could be achieved.

Secondly, the issue of who is paying for care and community support must be tackled. I support the plea made by the noble Baroness, Lady Hollins, for an action plan to succeed the Building the Right Support Action Plan. The Commons Select Committee inquiry recommended that the Department of Health and Social Care should

“redesign the financial incentives … so that local authorities”

and local NHS bodies

“do not seek to ‘offload’”

the care of

“autistic people and people with learning disabilities onto the NHS or place these individuals in inpatient facilities”.

Tackling these issues of funding flows now needs strong cross-governmental action.

There are some further actions that could be taken to improve the mechanisms around this area of work. I thank the human rights lawyer Dr Oliver Lewis for his input. Currently, mental health tribunals are not considered useful in dealing with people stuck in hospital in-patient units. Tribunals dealing with cases for this group should be required to have a medical member with expertise in autism and learning disabilities. Working through the practical issues of achieving a discharge destination for people currently detained could be improved if mental health tribunals are given the power to compel a local authority or NHS body to find a discharge destination in the community or if the Court of Protection was used more to rule on discharge arrangements.

The Bill presents an opportunity to correct an oversight under Section 73 of the Care Act 2014 affecting human rights, which the noble Baroness, Lady Barker, raised earlier. I too thank Dr Lucy Series and Professor Luke Clements for information about the issues raised in the Sammut judgment. As we have heard, that is a ruling that means the Human Rights Act does not apply where mental health patients get Section 117 aftercare in private settings. There is a real concern about the broader implications of this for patients receiving continuing healthcare through private services, children in private social care, and even patients detained in private hospitals under the deprivation of liberty safeguards. This latter group could expand to include the numbers of learning disabled and autistic people who are detained in hospital under the deprivation of liberty safeguards because they are no longer eligible for detention under Section 3 of the Mental Health Act. I am sure it was Parliament’s intention to protect the human rights of vulnerable adults and children for whom the state arranges health and care services. I hope that my noble friend the Minister will agree to the suggested meeting with Lucy Series and Luke Clements to discuss that.

I hope that we can bring forward amendments as necessary to correct this oversight as well as to address the other issues I have raised.

Carers and Poverty: Carers UK Report

Baroness Keeley Excerpts
Thursday 21st November 2024

(1 month ago)

Lords Chamber
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Baroness Merron Portrait Baroness Merron (Lab)
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One of the key things in all this is the identification of carers. As has been discussed in your Lordships’ House on a number of occasions, a lot of people do not identify as carers. Therefore, we are encouraging GPs and, in the case of young carers, schools, to identify carers, so that they can get the support they deserve. The noble Lord, Lord Darzi, identified that making sure that unpaid carers receive recognition and support is key, and it will be in the 10-year plan as we go forward.

Baroness Keeley Portrait Baroness Keeley (Lab)
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My Lords, I want to raise the issue of the 21-hour study rule whereby an unpaid carer is not allowed to claim carer’s allowance and be in full-time education of more than 21 hours a week. I cannot see a good reason for that rule. It would be very welcome if the Labour Government changed the rule to allow unpaid carers to study without losing their carer’s allowance.

Baroness Merron Portrait Baroness Merron (Lab)
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I thank my noble friend for that and can assure her that I will be discussing that very point with ministerial colleagues and am happy to return to her on it.

National Carers Strategy

Baroness Keeley Excerpts
Tuesday 19th November 2024

(1 month ago)

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Asked by
Baroness Keeley Portrait Baroness Keeley
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To ask His Majesty’s Government what plans they have to develop a National Carers Strategy.

Baroness Merron Portrait The Parliamentary Under-Secretary of State, Department of Health and Social Care (Baroness Merron) (Lab)
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My Lords, we are committed to supporting unpaid carers through our renewed vision for adult social care and the 10-year plan for the National Health Service. We have already taken action to increase the carer’s allowance earning limit, meaning that carers can earn around £2,000 a year more without affecting their entitlement. We have heard the calls for a national carers strategy and will continue to work collaboratively across government to ensure that unpaid carers are visible, valued and supported.

Baroness Keeley Portrait Baroness Keeley (Lab)
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I thank my noble friend the Minister for that reply, particularly on cross-governmental working, because I think that is one of the most important aspects. The Labour Government’s first national carers strategy was launched in 1999 by the Prime Minister, Tony Blair. The second strategy in 2008 had the support of Gordon Brown and seven Secretaries of State, because evidence from unpaid carers had shown that support for carers could not be solved by one government department but needed work across several. Sadly, Conservative Governments after 2015 did not continue with the national strategy, preferring a much less effective carers action plan. Carers are partners in care, so will my noble friend the Minister consider the strength of feeling among carers and their support organisations that they need and deserve a high-level strategy across government departments to support them?

Baroness Merron Portrait Baroness Merron (Lab)
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I certainly agree with the emphasis that my noble friend is putting on the need for cross-government working. I know she has been a champion of that for many years in the other place and that she will continue in your Lordships’ House to ensure that unpaid carers are properly supported and recognised. I can tell my noble friend that Minister Kinnock, as the lead Minister for unpaid carers, regularly engages with those with lived experience, the organisations that represent them and—importantly to the point my noble friend is making—with Ministers from other government departments, most recently the Department for Work and Pensions. We will be formalising our cross-government working with relevant departments and NHS England.