Lymphoedema Services

Tonia Antoniazzi Excerpts

Tuesday 27th March 2018 Westminster Hall

[Tonia Antoniazzi (Gower) (Lab)]

I beg to move,

That this House has considered provision of lymphoedema services.

It is a pleasure to serve under your chairmanship, Mr Gray, and I thank the Minister for being here to respond. This is the first Westminster Hall debate I have secured, and I am proud it is on an issue that affects many people in the United Kingdom. It was first drawn to my attention by my constituent Melanie Thomas MBE.

Lymphoedema or chronic oedema is a chronic swelling due to the lymphatic system failing. It mainly occurs when the lymphatic system is damaged by surgery, radiotherapy, trauma or infections. People can also be born with lymphoedema if the lymphatics have not developed properly. It affects people of all ages, and the swelling can occur in any part of the body. People think it is rare, but it is not, and research suggests that about six people per 1,000 have lymphoedema which, to put that into perspective, is about 400,000 people in the UK. If we look at the legs and feet of people in supermarkets or even here in Parliament, we will see swollen oedematous legs.

The problem of chronic oedema is getting worse as we get fatter and live longer with the consequences of other health conditions. Fifty-five per cent. of the average community district nurse case load is people who have swollen oedematous legs, with or without wounds. Such nurses, however, are not lymphoedema experts, and most do not have the skills in lymphoedema bandaging or prescription of compression garments.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on achieving this Westminster Hall debate. She referred to 400,000 people suffering from lymphoedema. Macmillan Cancer Support has estimated that there are 124,000 sufferers in the UK. Does she agree that there must be a better NHS support system, including more practice nurses, and specific training in lymphoedema care? The Government need to allocate the funding to support those suffering from this chronic condition.

[Tonia Antoniazzi]

I wholly agree with the hon. Gentleman. I will discuss training needs later—there is a definite need.

Lymphoedema can affect people physically, psychologically and socially. It has a significant impact on quality of life and prevents people from undertaking the normal activities of daily living. Reported issues include: massively swollen limbs that leak through clothes and soil carpets and beds; poor mobility; the inability to find shoes that fit and a limited choice of clothes; increased pain; inability to work; frequent admissions to hospital with cellulitis; stigmatisation and people being scared, anxious and depressed; and inability to cope and a feeling of lost control.

We might think that people can get treatment, but they cannot—that is the problem. Lymphoedema services are scarce. People suffering with lymphoedema cannot access the treatment they need or deserve. There is wide variation in the organisation and delivery of lymphoedema services throughout the United Kingdom. Some areas have commissioned full lymphoedema services—services for both cancer and non-cancer patients—others offer cancer-only services, and others provide no lymphoedema services at all.

Lymphoedema services that have been commissioned range from lone practitioners to small teams, so waiting and treatment times vary, as do treatment options. That diversity is not a result of patient need and is not patient-centred. Most people with lymphoedema go undiagnosed and untreated for long periods as a consequence of the poor level of knowledge among health professionals and the limited support from healthcare managers and commissioners. Lymphoedema is a growing condition, so what support are the Government providing to develop pre-graduate and postgraduate education for healthcare professionals to raise awareness of the condition? Something has to change.

Becoming aware of the lack of lymphoedema services in Wales, the Welsh Government listened to its members. I am very proud of that. The Conservatives might slate the Welsh NHS in the Chamber, but this is a wonderful area of work that has been developed in Wales, and I want to hail it. In 2009, the Welsh Government commissioned a lymphoedema strategy for Wales, which sets out clear aims to enable access for all lymphoedema patients to the appropriate services at the right place, at the right time and with the right person, regardless of whether their lymphoedema is related to cancer. Lymphoedema strategies have also been written in Northern Ireland and Scotland. England is the only nation not to have one.

In 2011, the Welsh Government invested £1 million to implement their lymphoedema strategy. The funding enabled lymphoedema services to be set up under every health board in Wales, managed by Lymphoedema Network Wales to maintain strategic oversight of the strategy for lymphoedema in Wales. Services are also made available in the more rural areas of Wales by the Tenovus Cancer Care mobile unit, which works closely with Lymphoedema Network Wales and the Abertawe Bro Morgannwg University Health Board.

Lymphoedema has always been a chronic, incurable condition, but new evidence suggests that significant improvements can be made for patients. In Japan and Europe, a super-microsurgical technique, which joins the defunct lymphatics to a functioning vein, has seen a 96% reduction in cellulitis episodes, and 70% of treated patients have stopped utilising compression garments as a result. The technique—lymphatic venous anastomosis, or LVA for short—is available on the NHS only in Wales. The Welsh Government supported the investment to make that happen and 42 patients per year can now have the innovative surgery that has the potential to cure their lymphoedema.

[Bambos Charalambous (Enfield, Southgate) (Lab)]

I have a constituent called Caroline, who is in her late 30s. She has had lymphoedema affecting her leg for several years. She recently had an infection and had to go to accident and emergency three times. She now has to wear surgical stockings for the rest of her life. Had she been diagnosed earlier, she would not be in that situation. Does my hon. Friend agree that, if a strategy had been in place, my constituent would not have needed to go to the NHS so often, saving money by controlling the condition when she was first diagnosed?

[Tonia Antoniazzi]

My hon. Friend makes a valuable point about the waste of money. The money is wasted on services because the lymphoedema is not being treated properly with the correct garments. We hope that that will be addressed so that the NHS can save money and be more effective.

We want better outcomes for patients as well as to save the NHS money. LVA is available privately in the UK, but not everyone has the £15,000 needed to have the surgery. LVA has the potential to cure lymphoedema and stops the need for admissions to hospital for cellulitis and for expensive compression garments. When will this surgery be available on the NHS for England, Scotland and Northern Ireland?

Wales also leads the way in developing a national paediatric lymphoedema service. Children can have lymphoedema, and in Wales 260 have the condition. Last summer I had the opportunity to meet some of them in Margam at an event organised by the Lymphoedema Wales Network. I saw them participate in a wide range of sports—that is important, because having lymphoedema does not mean people cannot participate in sport, and those young people were being actively encouraged to play football and rugby. The most important thing that came out of that day was the opportunity for young people to meet people like them, and for parents to meet one another. It was absolutely invaluable for those young people and their families to discuss things and have a support network.

Hon. Members should not think that Wales has it easy, because it does not. When it got the funding, the prevalence of lymphoedema was two per 1,000. It has now tripled to six per 1,000. It is the same story in Northern Ireland—when the Lymphoedema Network Northern Ireland was started, the prevalence was 1.33 per 1,000; it is now five per 1,000.

A small change can make a difference. If Wales and Northern Ireland can do it, why can we not have an equitable service among all nations? In England, I have been made aware that Herefordshire, Bedfordshire, Tamworth, Coventry, Luton, Southport and Aintree have services available only for cancer patients. Warrington, Barking and Bolton have no lymphoedema services at all. Morecambe bay’s services were under threat, but there was good news of additional funding. What is NHS England going to do to support its clinical commissioning groups in commissioning lymphoedema services, to end the inequity of service provision and patient suffering?

The NHS is wasting money trying to treat lymphoedema patients, as well as having a huge impact on patients’ lives. Many tell stories of wasted time, of being referred to numerous hospital specialties, of inappropriate wound dressings, with bandages often used, and of patients being admitted to hospital with cellulitis because the lymphoedema has not been treated. We need to save money and start treating patients with lymphoedema better. Let us improve education on chronic oedema, get more clinical expertise in the community to prevent complication and admissions, and ultimately, stop the current postcode lottery as well as the non-cancer inequity.

In 2002, a debate was held in this place. Very little has changed in the 16 years since. What will the Government do to support our constituents to gain the lymphoedema services they so rightly deserve? I would welcome the opportunity to facilitate a meeting between Lymphoedema Network Wales and the Minister at his earliest convenience.

Surgical Mesh Implants

Tonia Antoniazzi Excerpts

Wednesday 18th October 2017 Westminster Hall

[Tonia Antoniazzi (Gower) (Lab)]

Thank you, Mr Owen, for chairing this debate. I congratulate my hon. Friend the Member for Kingston upon Hull West and Hessle (Emma Hardy) on securing this important Westminster Hall debate on International Menopause Day.

Women are always reluctant to speak out about the personal and intimate medical issues that they experience. Sadly, they are highlighted only when things go wrong. Two women in my constituency have spoken out about their experiences, but I urge all women who have suffered as a result of a mesh implant to get in touch with their MP, because we know there are many other cases. As we have heard, there are women suffering whom we do not know about.

Recently I met a constituent of about my age whose life has been devastated. She had a mesh fitted in December 2011 and knew immediately that something was wrong. She could hardly move her right leg. She had pain all across her lower abdomen and back and in the right side of her groin. She had infections in the operation sites and was given three lots of antibiotics. Three weeks later the consultant said that she had mesh exposure. She was admitted on 3 February for what she thought was a removal, but it turned out to be for steroid injections, which did not alleviate the pain.

She was then sent for internal physiotherapy. I imagine that was very painful. She has also received physio on her back because of back pain. She saw numerous consultants and had many scans. Eventually, after bursting into tears during a physio session because of the pain she was in, she ended up seeing another consultant, who decided she should be admitted to remove the mesh. The operation was in August 2012 and she was pain-free for about a year after, but then it started again. She had constant pain in the groin, back, and across the lower abdomen, and she went back and forth to the doctor in the familiar scenario that we are hearing about today. It was even thought she might have bladder cancer, but all the scans were clear and still she was in constant pain.

My constituent was under the impression that the mesh had been removed, so when they were all scratching their heads and saying they did not understand why she was in pain, she was told she should try and manage it better. Understandably, she did not know where to turn. Eventually she saw a different consultant who asked her what she could feel inside, and she said it was the mesh. It turned out they had only cut the mesh in half. It was still there—no wonder she was in so much pain. Again, she went in for removal in August 2015. Unable to pass urine for three weeks, she had to self-catheterise at home.

About nine weeks later she started to feel as though she was getting on her feet again and was relatively pain-free for about a year, but it flared up again. She had another round of video urodynamics done, which was not pleasant. She was told that the corner pieces of the mesh were still there and it was too risky to remove them. After a recent flare-up with severe inflammation, she was sent for an urgent scan. Having spent the past six years in constant pain and discomfort, she does not have a partner because so much time is taken up looking after herself and her son and working.

During a visit to the consultant this year he asked what she wanted him to do. She said, “I came to be under your care because I was incontinent. I am still under your care six years later, still incontinent, and in pain as well now, so you tell me what you are going to do.” We must realise these women need help. As the MP for Gower, I have talked about my constituent and the plight of mesh-injured women. Many women do not like to discuss this topic and they do not want to complain. We cannot wait until 2019 for NICE to bring out guidance. I echo the words of the shadow Minister for Public Health, my hon. Friend the Member for Washington and Sunderland West (Mrs Hodgson), by asking the Government to hold a public inquiry into the numbers of women adversely affected.

Autism Diagnosis

Tonia Antoniazzi Excerpts

Wednesday 13th September 2017 Westminster Hall

[Mrs Cheryl Gillan (Chesham and Amersham) (Con)]

It is a pleasure to serve under your chairmanship, Mr Howarth. I will try not to take up too much time. I welcome the Minister to her place and look forward to hearing how she responds to the hon. Member for Enfield, Southgate (Bambos Charalambous). I add my congratulations, which I am sure will be echoed around this Chamber, to him on securing this important debate.

I am proud to be chairman of the all-party parliamentary group on autism, which has a wide membership across all parties. I like to think that this is one subject about which we do not need to be party political; we can all work together to try to secure better outcomes for people with autism and their families. I hope that the hon. Member for Enfield, Southgate and other new Members will join the APPG. Forgive me for the advertisement, but if they ring my office we will put them on the list and let them know what we are up to.

May I also welcome a very unusual appearance in this Chamber? I see that the Minister for Disabled People, Health and Work, my hon. Friend the Member for Portsmouth North (Penny Mordaunt), is here. We do not often see a Minister from another Department who is not called upon to speak coming in to listen to a debate. I am encouraged by that and I thank her for being here, because it shows how seriously we take this matter.

If I remember correctly, the last time we were in this Chamber to debate autism was in a debate secured by the late Jo Cox. We all acknowledge that she was a great Member of Parliament, and she had also begun to champion autism in a major way. We are grateful for her contribution, which will long be remembered in this House. It is worth looking back at that debate to see how far we have come since then and what measures are being put in place to bring down diagnosis waiting times, because all of us, including the Government, were in agreement that people are waiting too long for diagnosis—that is a given.

Last year I had the honour of chairing a well-attended APPG public meeting on this issue. Those who were there might remember hearing from Melanie, whose son Sam had waited nine years to receive a formal diagnosis. Concerns were first raised only two weeks after he started school. She was passed from agency to agency until finally, at age 14, her son was given a formal diagnosis.

Melanie told us how frustrated she was at the number of missed opportunities to pick up on Sam’s basically hidden needs. It meant that she could not put in place vital support to help him when he was young, which she believes has had a significant impact on his development and, as one of the interventions alluded to, on the subsequent mental health problems he faced. It is sad to say, but she now regrets having pushed her son to fit in and socialise, because that caused him an enormous amount of stress. Although a nine-year wait is an extreme example, the stories that our constituents tell us clearly show that we need to do more to reduce waiting times.

Let me touch once more on the importance of ensuring that we properly record diagnosis waiting times and break down the data by local area. The National Autistic Society has asked that diagnosis waiting times for children and adults become part of the mental health services data set and that measures are developed so that waiting times for diagnosis become part of the NHS’s accountability frameworks. I think that we could all agree on that. If those recommendations were taken forward in full, that would allow Members here to assess how well their local area was doing and to be assured that diagnosis waiting times were being prioritised locally, while supporting constituents to hold their local services to account. After all, that is what we are here for.

The Government have indicated previously that they are working towards a better methodology for recording autism diagnosis, but it would help if the Minister could put on the record the work that the Government are doing in this area and when Members can expect to start seeing the data, which will help us all.

I also want to highlight the data that should currently exist for diagnosis waiting times for adults. The Under-Secretary of State for Health, my hon. Friend the Member for Thurrock (Jackie Doyle-Price), is no doubt aware that a report on the results of the autism self-assessment framework was published in June. The self-assessment framework is a survey that is sent regularly to top-tier local councils in England to ask them to report on local implementation of the Autism Act 2009, which I introduced. Although the overview of the results across England was published in June, the Government still have not published the local area breakdowns on which it was based. That omission has meant that Members here are unable to scrutinise how their own local areas are performing. For example, we are aware that one local authority is reporting a 125-week waiting time. I am sure that the Members who represent that currently unnamed local area will want to know that information as soon as possible—I certainly would.

[Tonia Antoniazzi (Gower) (Lab)]

I thank the right hon. Lady for stating that this issue is not party political. Although the UK Government have introduced an Autism Act, it does not include children and has no funding attached to it, whereas the Welsh Government are investing millions in an innovative national integrated service. As well as investing millions in neurodevelopmental assessment services for children, they have introduced a 26-week waiting time target from referral to first appointment. Does the right hon. Lady think that patients in England would benefit from the Government looking at good practice in the devolved nations to improve services in England?

[Mrs Gillan]

As a former Secretary of State for Wales, I welcome all the initiatives taken in Wales on this matter. An earlier intervention indicated that Wales had only recently introduced an autism strategy, but in fact Wales introduced an autism strategy back in 2008, before the Bill was introduced, so they are to be congratulated on taking that original initiative—I am not proud; I will learn from any quarter where we can improve our services.

My memory of introducing the Autism Bill is not a pleasant one. The Government of the day opposed it, but we defeated them on Second Reading of a private Member’s Bill on a Friday. That was why they decided to allow their draftsmen to work with me to produce a piece of legislation that they would accept. I decided that it was better to get that on to the statute book at the time, rather than to try to broaden the scope of the legislation. However, the hon. Member for Gower (Tonia Antoniazzi) is right. I was disappointed, but that is what I was able to get through at the time, and I felt that it was important.

Can the Minister commit to looking into the local area waiting times and publishing the breakdown as soon as possible? It is worth noting that concerns have been expressed about the waiting times data provided by the self-assessment framework. Some have described it as local areas marking their own homework, with little oversight, which does none of us any good. Including data on autism diagnosis in the mental health services data set, as I have outlined already, would help make sure that data are recorded properly and accurately.

Before I sit down, I want to touch quickly on the issue of mental health and autism, which has already been alluded to in interventions. Autism is not a mental health condition in itself, but research indicates that as many as 70% of autistic people may develop mental health problems. The lack of a timely diagnosis contributes to that and can mean that autistic children and adults develop mental health problems. A diagnosis can help to unlock the right types of support for autistic people and their families, which can prevent the development of problems further down the line.

In addition, autistic people diagnosed as adults frequently report how transformational that diagnosis is in helping explain years—in some cases, decades—of feeling different. More than 60% of respondents to a National Autistic Society survey describe getting their diagnosis as a great relief. In some of the most serious cases, autistic adults have reported that prior to their diagnosis they have not only experienced serious mental health problems, but even had suicidal thoughts, as the hon. Member for Blaydon (Liz Twist) mentioned earlier.

Research from Sweden suggests that suicide rates are significantly higher among autistic people than the rest of the general public. The Swedish study, which I recommend that Members read, showed that autistic people who did not have a learning disability were nine times more likely to commit suicide than the general population. It is worth remembering that the Swedish healthcare system is different from ours. However, given the seriousness of those findings, it is vital to find out whether that also applies to the UK and, if so, to understand the reasons for that. I hope that the Minister will commit to investigating issues of mortality and autism, and highlight what proposals the Government might have more widely to ensure that autistic people’s mental health problems are better dealt with by the NHS.

I welcome this opportunity to get an update from the Government on how we are progressing in this vital area. The stories of the time that it has taken for families to get the right support in place are truly heartbreaking. From looking at the latest statistics, we see that every Member of this House will have at least 1,000 constituents who are affected by autism, so this is not just a problem for one; it is a problem for all.

I have an aim. I feel passionately that we should ensure that every single public-facing person employed by the Government or the state—whether a teacher, a nurse or a fireman—at some stage during their training has a module on autism, so that the wider state can really understand the needs of people and their families, and respond accordingly. I look forward to continuing to work with the Government not only on how we can get the waiting times down, but on how we can broaden the quality of the services that we offer to people with autism and their families. Once again, I congratulate the hon. Member for Enfield, Southgate on initiating this debate.