Living with Dementia

Robert Courts Excerpts

Tuesday 25th June 2019 Westminster Hall

[Robert Courts (Witney) (Con)]

It is a great honour to serve under your chairmanship, Mr Paisley. Like other hon. Members, I thank the hon. Members for Oldham East and Saddleworth (Debbie Abrahams) and for Cambridge (Daniel Zeichner) for bringing this timely and critical debate to the Chamber. We all feel very strongly about the subject. Many hon. Members have experienced, and have spoken movingly about, the impact of dementia on their own family. I am one of those, too. I will always remember the effect that dementia had on my grandfather in his final years. “Strict but fair” is probably the phrase used to describe that generation—my grandfather was a Royal Air Force officer and a teacher. I therefore have had personal involvement and have a personal interest in this matter, as so many do, and it is of course an emotional matter for many of us.

I am also married, as I have told the House before, to a music therapist. Many of my wife’s clients live with dementia. Classically, one always thinks of such people as being over 65, but that is not always the case. Increasingly, as my wife tells me, people who are much younger are affected, and it is those people on whom I would like to focus my brief comments.

I am a Dementia Friends champion. Many hon. Members are Dementia Friends and I warmly encourage any who are not to become one because of the education that it provides. One of the key lines and key lessons that dementia friend champions ask people to take away is that not everybody who is old has dementia and not everybody who has dementia is old. Although it is rare for younger people to have dementia, it is not that rare. About 5% of people with dementia are under 65, which is about 42,000 people—a significant number. I always ask people to become Dementia Friends because of the extraordinarily positive message that comes from that programme.

We should say not that someone is suffering with dementia, but that they are living with dementia. I am glad to hear that everyone is using the correct phraseology today—I hope that I will continue to do so throughout my speech. Secondly, one can live well with dementia, and there are many things that we can do in our constituencies and public lives to ensure that everybody does so.

Young onset dementia—people under 65—is very difficult to diagnose. It is easily confused with stress or depression at that age, so the diagnosis is delayed. Even when someone is diagnosed, it is often hard to find care. Care is often fragmented and targeted at people who are over 65, which is welcome where it is but, as the Dementia Friends programme shows, it is important that care is targeted to the individual’s needs.

That is why we are grateful for the Alzheimer Society’s Side by Side programme. I am honoured that YoungDementia UK is based in Witney. Its director, Tessa Gutteridge, is my constituent. It is a wonderful programme that seeks to bring together appropriate care for people under 65 who are living with dementia. For example, a social event for people in their 70s or 80s is not ideal for someone in their 40s who is living with dementia. It is much better if they are with people of their own age. YoungDementia UK have joined Age UK Oxfordshire and Guideposts Trust to bring together that specialised expertise and provide appropriate care and a support service targeted towards those with young onset dementia across Oxfordshire. We would like to see that throughout the whole country, which I know the Minister will think about in due course.

I am grateful to the hon. Member for Oldham East and Saddleworth for mentioning the report we have launched. I will not go through it in detail because she has done so fully. I would like to deal with the issue of employment. Under the Equality Act 2010, dementia is a disability. That particularly impacts those 42,000 people under 65, who may well be working. Their challenge is unique because they may themselves be carers for parents or children, they may be holding down a full-time job and they may have a mortgage to pay. It is particularly difficult. There is a stigma, as we know, around telling an employer that one is living with dementia.

There are difficulties in ensuring that the reasonable adjustments that should be made are made. That may be due to a lack of awareness of rights—perhaps employers do not realise that they should be making those reasonable adjustments. However, they may not realise what adjustments can be made. That is why I will give another unashamed plug for the Dementia Friends programme, which explains to people how it feels to live with dementia and what reasonable adjustments can be made.

The Government have an important role to play, which is dealt with in the all-party parliamentary group on dementia report. I ask the Minister to consider asking the Department for Work and Pensions to revise its guidance to employers about their responsibilities to support people who are living with dementia. It can cover reasonable adjustments, information on the Access to Work programme, and how to support employees with dementia. There is much more to do before we can call ourselves a society that is truly dementia-friendly, but I know that together we can do it.

Oral Answers to Questions

Robert Courts Excerpts

Tuesday 18th June 2019 Commons Chamber

[Jackie Doyle-Price]

The case that the hon. Lady mentions is clearly very concerning. It is for local authorities to make sure, when they commission care providers, that they are fit for purpose and discharge their responsibilities in the local care plan, but we also need to recognise that people with learning disabilities as well as mental health issues are particularly vulnerable. We need to make sure that local authorities and local NHS services work together more effectively to ensure that care needs are not neglected.

[Robert Courts (Witney) (Con)]

I was interested to see recent comments by the Secretary of State regarding the use of music to combat over-medicalisation—I should declare that I am married to a music therapist—so does that mean he shares my interest in the use of music therapy to combat mental health issues, as well as dementia and other conditions?

Social Media and Health

Robert Courts Excerpts

Tuesday 30th April 2019 Commons Chamber

[Matt Hancock]

Mr Speaker, that question was so good it is only a pity it was not asked earlier in our exchanges.

I want to address two important points. First, the hon. Lady’s son is a case in point of how, if parents do not vaccinate, they endanger not only their own children but other people’s. It is because of a failure to vaccinate that these diseases still exist, and it is children who are too young to be vaccinated who are at risk. She has made the case more powerfully than anybody for the importance of vaccinating and keeping vaccination rates up, and I am grateful to her for sharing that personal experience. On the second point, she is quite right that we all have a responsibility to act, and act we will.

[Robert Courts (Witney) (Con)]

It is a privilege to have the last word.

The whole House is concerned about the effect that the internet can have on young people’s mental health, and I welcome the action that the Secretary of State is taking. Is there truth and accuracy in the reports that Wikipedia did not attend yesterday’s summit? If so, does he share my disappointment, and does he feel that Wikipedia must take this issue seriously and engage with it?

[Matt Hancock]

Unfortunately, those reports are true. I share my hon. Friend’s disappointment that Wikipedia did not attend either of the two summits, despite having been invited. At yesterday’s summit, we agreed that we would get in touch with Wikipedia in robust terms, because it is not acceptable for it to shirk its social responsibilities either.

If I may say so, I think that the statement and the responses to it have shown that there is unanimity in the House. Every speaker has mentioned the need to tackle anti-vaccination misinformation and the social media organisations’ responsibility and duty of care in relation to the health—mental and otherwise—of people on their platforms. The House speaks with one voice, and the social media companies, and the internet companies that have not yet engaged should listen.

NHS Long-term Plan

Robert Courts Excerpts

Monday 7th January 2019 Commons Chamber

[Matt Hancock]

Of course we are putting more money in, and in the coming days we will announce the local provision increases for the first year—there is a £6 billion cash uplift in year 1. We will be working with local areas in the months ahead on the plans for years 2 to 5.

[Robert Courts (Witney) (Con)]

In the past few weeks I have visited Witney Community Hospital, the Windrush surgery, the Nuffield health centre and the associated nearby pharmacies, and I have seen not only their brilliant winter preparedness but how they form a hub for care close to home. Does my right hon. Friend agree that ensuring that people are treated in the community and improving public health is the way to ensure that we have free, high-quality care for everybody?

[Matt Hancock]

My hon. Friend is absolutely right. The community hubs being developed in many different parts of the country are critical in bringing together support and enabling early intervention. The adage that a stitch in time saves nine is almost as old as “prevention is better than cure,” but both are equal in their wisdom.

Oral Answers to Questions

Robert Courts Excerpts

Tuesday 27th November 2018 Commons Chamber

[Stephen Hammond]

The hon. Gentleman raised that matter with me last week. He knows that the Government take it very seriously and that we are asking the General Medical Council for an immediate review of that case, but I am happy to meet him to discuss it further.

[Robert Courts (Witney) (Con)]

I welcome the new early diagnosis ambition for cancer, but does the Minister agree that for the people of West Oxfordshire, this is about delivery and having the people available to implement the strategy that he has worked so hard to produce?

Oral Answers to Questions

Robert Courts Excerpts

Tuesday 23rd October 2018 Commons Chamber

[Stephen Barclay]

As the Secretary of State set out, we are making a significant funding commitment to the NHS—the extra £20 billion—but that is not conditional on writing off debt.

[Robert Courts (Witney) (Con)]

Will the Minister please provide an update to the House on work to ensure that we train more GPs for England, particularly for west Oxfordshire?

[Matt Hancock]

Yes. My hon. Friend will have heard that we have record numbers of GPs in training— 10% up on last year. I want to see more GPs—5,000 more across the country—and, no doubt, some of those in west Oxfordshire.

Oral Answers to Questions

Robert Courts Excerpts

Tuesday 24th July 2018 Commons Chamber

[Matt Hancock]

I have seen what has happened, and maybe the reason why the SNP has had to do that is that in England we have increased the medical workforce faster than in Scotland. When the performances improve in the Scottish NHS, we in England will start to take lessons, but until then I will concentrate on making sure we get the very best NHS right across the country.

[Robert Courts (Witney) (Con)]

Barely two years after the shock closure of Deer Park medical centre in Witney, the people of Witney are now deeply concerned over the future of Cogges medical centre. Please will Ministers explain what they are doing to help with recruitment and retention of GPs in rural areas, and will the Secretary of State meet me to discuss the provision of GP services in our market towns?

[Matt Hancock]

I or the Minister of State would be delighted to meet my hon. Friend. Making sure that our GP services are of high quality and can respond to the health needs in the local community is absolutely mission-critical to getting prevention right, and I hope that my hon. Friend’s insights will feed into the long-term plan to guarantee the future of the NHS.

Health and Social Care (National Data Guardian) Bill

Robert Courts Excerpts

3rd reading: House of Commons & Report stage: House of Commons
Friday 6th July 2018 Commons Chamber

[Robert Courts (Witney) (Con)]

It is a great honour to speak in the debate on this Bill. There are three things that I would like to say, and I shall say them very briefly as I know that others wish to speak. First, I am grateful to my hon. Friend the Member for Banbury (Victoria Prentis), who is not in her place at the moment. Many of the issues that are relevant to the north of my constituency are the same as the ones that she has raised. Her comments on the transfer of data between the Horton, Chipping Norton and Warwick hospitals apply to me as much as they do her, so I will not repeat them. I will simply associate myself with her comments.

Secondly, I want to pay tribute to the hard work of all the NHS staff in the Witney and West Oxfordshire constituency, particularly at the community hospitals at Witney and Chipping Norton and at the GP surgeries. It is extraordinary that, in this day and age, they are unable to share their data freely, that people therefore have to repeat their stories to different practitioners and that those practitioners cannot see all the relevant medical records quickly and easily online, as they should be able to. We should enable that to happen as soon as possible.

Thirdly, technology has a huge role to play in ensuring that we wring every last penny out of the NHS budget. As my hon. Friend the Member for Havant (Alan Mak) rightly said, we should be getting to a place where people can have an app that enables them to look at their records, book appointments and hold consultations over the internet using their phones. That will help to save their time and spread the budget as well as we can to ensure that we get best value. It will also help us to make the best use of the hard-working staff who do so much in our NHS.

Childhood Obesity Strategy: Chapter 2

Robert Courts Excerpts

Monday 25th June 2018 Commons Chamber

[Steve Brine]

Yes. The Daily Mile happens when children are in school, but getting to school is important. I work with Sustrans, a charity, quite a lot in my constituency, as I am sure many Members do. It works to help children to cycle and scoot to school. That is very important, and the hon. Lady is right to raise it.

[Robert Courts (Witney) (Con)]

rose—

[Mr Speaker]

The hon. Member for Witney (Robert Courts) is starting to resemble a runner who is literally itching to get out of the starting blocks.

[Robert Courts]

As the father of a two-year-old, I am increasingly concerned about the sedentary lifestyles that children lead. Will the Minister join me in praising Middle Barton, Great Rollright, Queen Emma’s, Clanfield and Stanton Harcourt primary schools in West Oxfordshire, which have signed up to the Daily Mile programme? Will he encourage others to do the same?

[Steve Brine]

My hon. Friend will have enjoyed that contribution; I suspect his office are clipping it as we speak. We have a national ambition for every primary school to adopt an active mile initiative, such as the Daily Mile, as a result of this plan. I visited Western Church of England Primary School in my constituency recently, which has good plans to do that. This week is National School Sport Week. I will be at my sports day on Friday, taking part—as I am sure you will be at some point, Mr Speaker.

ME: Treatment and Research

Robert Courts Excerpts

Thursday 21st June 2018 Westminster Hall

[Carol Monaghan]

ME receives practically no biomedical research funding, which I will come back to. Because of the misunderstanding of the condition, the treatments available are often more damaging to the person than no treatment at all.

Merryn Crofts was just 15 when she experienced hives and swelling in her joints after a family holiday in Majorca. Tests revealed that she had contracted glandular fever. Despite dozens of medical appointments, Merryn’s condition deteriorated; she suffered breathing problems, exhaustion and excruciating hypersensitivity to touch, light and sound. She was eventually diagnosed with ME. This once bright young woman was forced to wear an eye mask and suffered from severe migraines, brain fog, slurred speech and persistent infections. Stomach problems and difficulties swallowing meant that her weight plummeted to just 5½ stone. Merryn was eventually fitted with an intravenous nutrition line but was given a terminal diagnosis in 2016. Merryn wrote in her blog:

“Having severe ME, is like being trapped in your own body every single day. There is no rest, you are bedbound all day every day. It snatches the most simple things away from you like being able to wash yourself, even in bed. Being cared for in every way possible. In terrible pain, from everything. Not being able to talk on the phone or have visitors, and feeling worse about saying no every time someone asks again. Months and months in hospital. Severe infections. Breathing problems. Low immunity. Problems anywhere and everywhere in the body. Paralysis. Severe hypersensitivity. The list is endless, and if I was physically able to type I would carry on. Spread awareness and remember all of us and all of those who have lost their lives.”

Merryn died on 23 May 2017, just days after her 21st birthday.

Why is the treatment for people with ME so poor? The lack of understanding shown by some healthcare professionals of a person’s suffering is one of the greatest frustrations to the ME community. Much of that stemmed from the publication of the controversial PACE trial. The treatments investigated in the PACE trial were based on the hypothesis that ME patients harbour “unhelpful” convictions about having a disease and that the continuation of their symptoms is the result of deconditioning.

The PACE trial compared different treatments, including cognitive behaviour therapy—CBT—and graded exercise therapy, or GET. The results that were published in The Lancet in 2011 seemed to show that GET and CBT could bring about some improvements in a person with ME. Although that may seem positive, if we dig a little deeper we discover that the parameters for recovery were changed midway through the trial and the results depended on self-reporting. Patients have told me that they were pressurised to describe improvements they really did not feel. One participant in the original trial said:

“After repeatedly being asked how severe...my symptoms were. ..I started to feel like I had to put a...positive spin on my...answers. I could not be honest about just how bad it was, as that would...tell the doctors I wasn’t trying and I wasn’t being positive enough.”

[Robert Courts (Witney) (Con)]

The hon. Lady is making a powerful speech and is drawing attention to this much misunderstood but very serious condition. My constituents will be grateful to her for that. She made some powerful comments on the PACE trial; will she comment on the way that NICE guidelines have an impact on how the condition is viewed?

[Carol Monaghan]

I will come on to the NICE guidelines. They are under review, and all politicians can help with that. I have already written to NICE about the issue and I will ask the Minister about that later.

We now know that 13% of the participants in the PACE trial qualified at baseline as “recovered” or “within the normal range” for one of the study’s two primary measures—self-reported physical function—even though they were classified on the same measure as disabled enough to enter the study. That anomaly, which occurred because the investigators weakened key outcome thresholds after data collection, invalidates any claim that patients recovered or got back to normal. The overlap in entry and outcome criteria is only one of the trial’s unacceptable features.

For patients, the impact of PACE is severe. The recommendation of GET as a treatment for ME has provoked a backlash from patient groups, who report that many people with ME end up more severely disabled after a course of GET than before. I have spoken to people living with ME who have tried to do GET because they are so desperate to get better and have ended up in a wheelchair or bedbound as a result of this programme.