COVID-19 UPDATE

If you have have any Covid-19/coronavirus symptoms, (high temperature or new consistent cough) please do not visit us.

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Research

Why do we do research?

Phyllis Tuckwell wants to make sure that you and your family receive the best possible care and support.  Carrying out research helps us to understand the needs of those that we are caring for, so that we can best support future patients and families.

What type of research do we do at Phyllis Tuckwell?

The research we support usually explores how the different aspects of care including physical, social, spiritual and psychological aspects, can be improved for patients, and their families and carers.

Common research methods that we use are:

  • one to one interviews with a researcher,
  • focus groups
  • questionnaires.
Current research projects

We are currently actively recruiting patients for two research projects.
We are also promoting the “Join Dementia Research” project. Please see the video below.

The Motor Neurone Disease (MND) Register for England, Wales and Northern Ireland. This study is being organised by researchers at Kings College Hospital and John Radcliffe Hospital in Oxford. The purpose is to collect and store information about every person with MND in the UK. The information collected will be used by researchers to look at how many people are diagnosed with MND each year, how many people currently have the disease and how this is changing with time. Information about where people with MND live is also collected to allow for planning the care of people with MND. It will also tell researchers more about the possible causes of MND. We collect information about the disease itself, for example, where a patient first noticed symptoms, so researchers can look at how this relates to disease progression.

ProSec3 – A multi-centre evaluation of excessive saliva management in patients with Motor Neurone Disease (MND). This study is being led by the Sheffield MND Care and Research centre and is assessing how saliva problems are affecting patients with MND. The study will be looking at how many patients with MND have saliva problems and how problematic this is. It will also look to compare the different therapies for managing saliva and the side effects they give rise to. It also aims to develop an effective way of measuring the severity of the saliva problems that patients with MND are experiencing.

Want to know more?

To find out more about research at Phyllis Tuckwell please speak to a member of the research team:

Dr Jo Vriens (Palliative Medicine Research Consultant) – Jo.Vriens@pth.org.uk

Louise Groves (Palliative Research Nurse) – Louise.Groves@pth.org.uk

If you are invited to be part of a research study, you will be told exactly what being in the study will involve. If you don’t want to take part, you are free to say no. If you do agree to take part, you can change your mind at any time. You do not have to give a reason why you changed your mind, and saying no will not affect the care you receive.

Covid-19 Nationwide Research

There have been a number of national studies around Covid-19 produced, from looking at younger people living with a terminal illness to those dealing with being bereaved during a pandemic.

The Health and Wellbeing Research group have conducted a study into the non-intended consequences of epidemic control decisions – more specifically how vulnerable young people are living with life-limiting or life-threatening conditions and their families during a pandemic. You can read it here: https://healthwellbeing.kmi.open.ac.uk/covid-19/vulnerable-young-people-living-with-life-limiting-life-threatening-conditions-and-their-families/

The Universities of Liverpool and Sheffield have developed an online questionnaire to enable people to share their experiences of end-of-life care provision during the COVID-19 crisis, to help plan for and manage situations like this in the future. More precisely, they would like to hear from those who have experienced the death of a relative or friend, and health and social care professionals who cared for a patient who died during the COVID-19 crisis. If this applies to you, and you wish to take part in their research, you can do so here.