Health: Dementia

Baroness Couttie Excerpts

Monday 5th July 2021 Lords Chamber

Asked by

[Baroness Couttie]

To ask Her Majesty’s Government what is the national average waiting time for a referral to a memory service following a suspected dementia diagnosis; and how this has changed since January 2020.

[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord Bethell) (Con)]

My Lords, data on wait times for referrals is not collected for memory services. However, NHS Digital does collect data on new memory assessment referrals, which saw 2,136 people referred to a memory service in May 2021—a 17% increase compared to April 2021. This compared to 2,896 new referrals made in January 2020. The Government take referrals extremely seriously: they have made £17 million available this financial year to NHS England and NHS Improvement to support memory services and increase diagnoses.

[Baroness Couttie (Con)]

I thank my noble friend for his Answer and declare my interest: my brother is a trustee of Dementia UK, an organisation which recently produced a report, Facing It Alone—which I hope my noble friend has read—highlighting the challenges faced by families and health professionals when tackling dementia. What steps are the Government considering to address the gap in diagnosis and access to post-diagnostic support, such as increasing the number of admiral nurses and the amount of primary care, as called for by Dementia UK? Will he also consider facilitating a meeting between the appropriate Minister in the other place and Dementia UK to discuss what more can be done to meet the requirements of these vulnerable people?

[Lord Bethell (Con)]

My Lords, I pay tribute to the role of admiral nurses and the model developed by Dementia UK; it is indeed a very valuable contribution. The dementia team at the department met with Paul Edwards, director of clinical services at Dementia UK, in April 2021, to discuss how we could work together more closely. I am happy to follow up on that meeting with any recommendations that Dementia UK might have for how we can focus on this important area.

Mesothelioma

Baroness Couttie Excerpts

Thursday 27th October 2016 Grand Committee

[Baroness Couttie (Con)]

My Lords, I start by thanking the noble Lord, Lord Wills, for introducing this very important topic. Unfortunately, at the beginning of this year, someone I know extremely well was diagnosed with mesothelioma. She is a middle-aged woman who does not have any connection to the building industry and has not lived or worked in a building under renovation—and nor has any of her family. As noble Lords can imagine, therefore, it was an incredible shock. Over this year, I have become quite familiar with the disease and its treatments, so this afternoon I am speaking from the point of view of the patient.

What has really struck me is the stark contrast in the drugs you receive if you treated are under the NHS and those you can receive if you are being treated under private healthcare and are wealthy enough to be able to afford the best possible treatment available. Those treatments can extend life expectancy, which on diagnosis if you undergo all the chemotherapy, is on average about 18 months. The NHS provides the chemotherapy and does an absolutely wonderful job. An operation can be undertaken, although it is a very complex one, to remove the multiple tumours associated with mesothelioma. It can involve removing the diaphragm, the pleura around the lungs and the membrane around the heart. Skilled surgeons are required to undertake the operation and some healthcare companies provide cover for it, although the NHS will not. The cover that most healthcare providers offer does not necessarily meet the full costs of the surgeons, who have to be very highly skilled. Undertaking the operation means that you can double the life expectancy of an individual.

At the end of chemotherapy, what are the options? You can continue with a drug called Avastin, which is licensed for breast cancer but not for mesothelioma. It can be taken in conjunction with the rest of the chemotherapy. It costs £5,000 a pop. Some health insurance companies and providers will cover it, but the NHS will not. You take it once every three weeks, so more than £86,000 a year is required to cover the cost. Some patients have been on it for more than two years without recurrence. Its success varies as people vary, but there have been some great successes.

If—or unfortunately more like when—the mesothelioma returns, what are the options? You can try the chemo again, although sadly it is not always effective. The NHS will provide that chemo. What health insurance companies and the NHS do not cover is access to the latest drugs. The one that is most recommended costs a quarter of a million pounds—it is a one-off treatment and it has to be funded. Under the NHS you have access to UK trials, but because this disease is incredibly rare and has multiple sub-types, the trial you would be best suited to is not necessarily taking place in the UK, so if you want to get on a trial you have to fund your own transport and accommodation costs, possibly for several months while you undergo the trial. Life expectancy can and has been proven to be extended in people who have been fortunate enough to be able to afford this.

As the noble Lord, Lord Wills, mentioned earlier, there are many civil suits as people are able to identify the source of asbestos that triggered their mesothelioma. However, a group of people are unable to identify the source and are totally reliant on the Government’s compensation scheme, which goes nowhere near covering the costs that will prolong their lives. I therefore ask the Government to please look at the compensation scheme to see whether the payments can be upped so that everybody, regardless of their own wealth, can have access to these drugs. It involves a relatively small number of people because only about 2,500 a year are diagnosed with mesothelioma, and only a percentage will not have a civil action. It therefore should not cost the Government that much. It seems only right and fair to make sure that everybody has the opportunity to prolong their life as far as possible.