Questions about MS? Call us on 0808 800 8000
a photo of a NHS pills and prescription bag

Deciding which treatments get funded: the value for money issue

Dr Annie Hawton

Dr Annie Hawton, Senior Research Fellow at the University of Exeter. She tells us about her research investigating how well the NHS funding treatment process works for people with MS. 

The NHS has to work within a certain budget. That’s why the National Institute for Health and Care Excellence (NICE) tests if a treatment is good value for money – we call this cost-effectiveness.

As Health Economists we look inside the black box at how they do this. It has a massive influence on the types of treatments people can get.

Being impartial

To decide if the NHS would be getting good value for money, NICE weighs up the price of a new treatment with how much it'll affect someone’s life. They look at how many years you’re likely to live and what your quality of life will be during this time.

NICE’s job is to be as objective and fair as possible. So they work out the effect of a treatment on quality of life using a standard questionnaire, called the EQ-5D.

It looks at aspects of health that are important to people in general, like mobility and pain. So it hopes to be suitable for any health condition.

Annie Hawton researcher profile picture
There’s a strong argument for using MS-specific and wellbeing questionnaires when deciding if a treatment is good value for money.
Dr Annie Hawton

Does it work for MS?

But what if different things matter to people with MS compared to other conditions?

For example, the EQ-5D doesn’t ask about fatigue. So if one of the effects of a treatment is to improve fatigue, this wouldn’t get picked up by the EQ-5D. And it might not get taken into consideration when NICE calculates the cost-effectiveness.

Another example is wellbeing. Some treatments might not have a direct impact on standard measures of health. But they might do wonders for someone’s wellbeing. For example, doing the things in life that you’d like to do. And being able to be who you’d like to be. It’s about weaving your own course. But the EQ-5D doesn’t look at this.

How fair is it?

This is where my work comes in. I’m researching how well the EQ-5D that’s used by NICE works for MS. Using the UK MS Register, we asked people with MS to complete multiple questionnaires every six months:

  • The EQ-5D
  • Three wellbeing questionnaires
  • A MS-specific questionnaire called MSIS-8D

We recorded any changes in their life due to their MS. For example if they changed employment due to MS, or had more symptoms of anxiety or depression. We then tested how well each questionnaire picked up these changes.

MS-specific questionnaire

The MSIS-8D is similar to the EQ-5D. But it has more categories, some of which are relevant specifically to the quality of life for people with MS. The eight categories are:

  • physical functioning
  • mobility
  • social activities
  • daily activities
  • fatigue
  • cognitive function
  • emotional wellbeing
  • depression

Our results

We found the MSIS-8D and the wellbeing questionnaires were better at picking up changes related to someone’s MS than the EQ-5D. So they might detect benefits of a treatment that would be overlooked by the EQ-5D.

There’s a strong argument for using MS-specific and wellbeing questionnaires when deciding if a treatment is good value for money. We can only make treatments available on the NHS if we can effectively detect the treatment’s benefits.

Hopes for the future

In the future, I hope there’ll be more treatments, especially for people with progressive MS. And I hope we’ll have the right tools to help NICE detect all the benefits of these treatments.

We’re now working with the organisation that developed the EQ-5D to test how we can make it more responsive to measures like wellbeing. And we’re publishing our results, speaking at conferences and we’re still working with people with MS to get their input about what’s important to them.

This article first appeared in MS MattersAutumn/Winter issue 2023