Medical Cannabis under Prescription

Debate between Bambos Charalambous and Tonia Antoniazzi

Monday 20th May 2019 Commons Chamber

[Tonia Antoniazzi]

I entirely agree, and I am very concerned about it. We have heard in the House this evening that people are growing their own cannabis, and there is a growing trade. There is an online family of people who are helping each other to obtain the most THC possible from different combinations of different plants. It is a complete industry. Why are the Government not getting a grip, and providing a proper, GMP-standard, pharmaceutical product for people?

I also want to talk about the cost, which is extraordinary. Has the Minister or anybody in her office done a cost-analysis? Alfie Dingley’s case provides a classic example: how much has he saved the NHS by not having emergency medication and not using the ambulance service to go into hospital? It seems nonsensical that we are not going down this road.

I want to talk about a couple of my constituents. Only a few weeks ago I had a visit from the parents of a 14-year-old son. My son is 14 too, so their situation struck a chord with me. Their son has intractable epilepsy. Mum has given up her job to look after him—he has a very efficient system around him. He benefits from a ketogenic diet and the next available medicine is Epidiolex. Epidiolex does not contain THC but she wants her child to be on a trial, and the trial is limited. A mum should not come to me begging for her son to be on a trial, but when I spoke to her about medical cannabis with THC she was reluctant to engage because of a fear of breaking the law and of not following the system properly. All our families are following a system. They are at the end of the road in terms of what medicine they can be given, so I want them to be given medical cannabis with THC as soon as we can.

NHS England is drafting terms of reference, and as co-chair of the APPG I appreciate its efforts. These children must have access, however; they must not be waiting three or four years. I urge NHS England to work collaboratively with the devolved nations because we need our children in Scotland, Wales and Northern Ireland to have the same benefits.

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

I congratulate my hon. Friend on her excellent speech and the excellent work she has been doing with the APPG. I also congratulate the End Our Pain campaign, which has done so much to raise this issue. Does my hon. Friend agree that NHS England needs to improve its guidance on intractable epilepsy and fast-track it so that children can get the THC they need?

[Tonia Antoniazzi]

I totally agree that a completely different approach is needed if we are to get the medicine to our families now.

It is very upsetting that families are risking getting criminal records by bringing in medical cannabis and are having to fundraise for prescriptions. I pay tribute to families that are fundraising in the public domain—to the parents and the friends, such as Craig who has cycled many, many miles up Pen y Fan recently to raise money for Bailey. I say to all those families that are raising money, “Don’t give up; there is hope, and hopefully we will be able to get you the medicine you need on prescription from the NHS.”

It would be very remiss of me to stand here and not pay tribute to the late Paul Flynn, former Member for Newport West. Paul was an absolute inspiration. I was a patron of an organisation with him and he was inspirational when I went to Birmingham to speak with him. His knowledge of and passion for medical cannabis was second to none, and I know that, as Madam Deputy Speaker mentioned, he is watching over us now and hoping we will get the breakthrough he was working so hard towards.

My hon. Friend the Member for Manchester, Withington (Jeff Smith) spoke of a bespoke medical response and creative thinking, and I ask the Minister to work with us: pull groups of families out of local trusts and set up an immediate observational trial with the 18 families that we have at End Our Pain; get the NHS to pay for the costs of the medicine when a private prescription has been issued until NHS prescribing is more routinely accepted; and allow the guidance from medical cannabis experts to be used. Some excellent UK experts have come together to form the UK Medical Cannabis Clinicians Society, and they have issued prescribing guidance, too. I say, “Please, work with the NHS to give clear central guidance that medical cannabis is legal and that there is an expectation that it will be prescribed as a normal unlicensed medicine when appropriate.”

State Pension Age: Women

Debate between Bambos Charalambous and Tonia Antoniazzi

Thursday 31st January 2019 Commons Chamber

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

I have a number of constituents who have tried to contact the Department, but have not successfully received a response. This just adds insult to injury. Does my hon. Friend agree that the Government need to ensure that people get full responses to their inquiries?

[Tonia Antoniazzi]

When people write to complain, their correspondence has to be recognised, responded to and acted on. It is an absolute disgrace if that is not happening.

Safeguarding Children and Young People in Sport

Debate between Bambos Charalambous and Tonia Antoniazzi

Tuesday 1st May 2018 Westminster Hall

[Bambos Charalambous]

The hon. Gentleman makes an excellent point. Trying to close the loopholes, to stop abuse happening, is paramount; but we must also take into account the fact that many smaller clubs are run entirely by volunteers, and we must thank the genuine volunteers who are there for the benefit of the young people in the sport.

More structural support is needed at the regional or county level to ensure that small clubs get help with implementing safeguarding policies. There should be someone at the regional or county level who ensures that the policies are adhered to and that proper monitoring takes place. It is often at the smaller clubs that abuse will first happen, as in Ian Ackley’s case. We also need to ensure that children and young people feel able to speak out and feel that they will be listened to when they call out abuse. That is why we need to make sure that they can do so in a safe environment, and that they are encouraged to speak out. Children and young people could be given confidence during player induction at sport settings about speaking up if they come across abuse, and there are other means whereby clubs can encourage young people to speak out whenever they come across abuse or anything happens to them.

When I met the Lawn Tennis Association I was staggered to discover that not all tennis clubs are affiliated to it. It has approximately 2,700 members, but more than 1,000 clubs are not registered with it. Some people might say, “So what? What difference does it make?” This year, for the first time, the LTA has made it a requirement that all affiliated clubs use only LTA-accredited coaches, who must meet a minimum safeguarding standard. Unregistered clubs, on the other hand, are free to appoint whomever they choose as a tennis coach. According to the LTA, there are more than 800 “accredited tennis coaches”. There are other coaching courses apart from the LTA’s, but it is worth noting that some accreditation can be obtained online for as little as £80. That means that a child or young person could be having lessons at an unregistered tennis club with a coach who obtained their accreditation online by answering tick-box questions.

What I am saying is in no way intended to call into question good unaffiliated tennis clubs and coaches, but, as we have seen time and again, people who abuse children and young people find a way to get close to them, just as rain gets through cracks in the pavement. The question arises whether coaching courses should be licensed and have Government-approved kitemarks to give people an idea of the quality of the safe- guarding training undergone by the coach. Perhaps that could be a role for the child protection in sport unit, which already gives ratings to governing bodies. It is often hard for parents to navigate all the different accreditations and codes, and anything that makes things simpler, and easier to understand, should be encouraged.

More needs to be done about summer sports courses. As things stand, there would be nothing to stop me or anyone else hiring a field and setting up my own summer football skills course for kids. With some clever marketing, I could be up and running with some cones, bibs and footballs. I think more checks need to be carried out in those casual arrangements, too. It is the sort of thing that local authority trading standards teams could check, provided they had the funding to do so.

[Tonia Antoniazzi (Gower) (Lab)]

I congratulate my hon. Friend on securing the debate. Does he agree that all sports clubs, at whatever level, dealing with children should have whistleblowing policies under which they can refer themselves to a Government or sports organisation and procedures that are available for parents and children alike?

[Bambos Charalambous]

My hon. Friend makes a very good point. Whistleblowing is important and must be catered for as far as possible. Clubs should be able to report things higher up and whistleblowers’ reports should be properly investigated.

Having mentioned coaches, I want to turn to the definition of “regulated activity”. The Protection of Freedoms Act 2012 tightened the definition of regulated activity in relation to children to mean working “regularly” —four or more days in a 30-day period—and “unsupervised” with children. Coaching falls into that category. If someone satisfies those criteria, sports clubs can carry out an enhanced DBS—Disclosure and Barring Service—check, with barred list check to see whether the individual is barred from working with children. However, it is an offence for a club to ask for an enhanced DBS check on an individual if the role does not require one. For example, the coach who coaches the youth team every Thursday night would be classified as falling into that category, but their assistant, who is technically supervised by the coach, would not be caught by that legislation.

Supervision does not always prevent abuse from happening, as it often happens in plain view, with people disbelieving that someone whom they have got to know well and even considered a friend could ever commit such vile acts of abuse.

Lymphoedema Services

Debate between Bambos Charalambous and Tonia Antoniazzi

Tuesday 27th March 2018 Westminster Hall

[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.