North Midlands MND Care & Research Network

Above are photos of our teams and some pictures taken at our launch event - Princess Anne, who has been the Royal Patron of the Motor Neurone Disease Association since 2008, met with healthcare professionals, patients and also carers during the special trip to the World of Wedgwood. The visit was organised so the Princess Royal could formally unveil the North Midlands MND Care and Research Network. The service, which was created in June 2018, is based at Royal Stoke University Hospital and funded by UHNM, NHS Trust and the MND Association.

  • Our MND Care & Research Network provides a service to people with MND in Staffordshire and surrounding areas, including Cheshire and Shropshire.
  • Support is provided to people living with MND and also their families.
  • We do this by helping with MND symptoms as much as possible.
  • We also help with providing and coordinating the practical and emotional support that people with MND and their families may need.
  • Our Consultants and Specialist Nurses or MND Coordinator may be involved at (or shortly after) diagnosis.
  • Support is offered based on the needs of each individual person and their family. People with MND are reviewed in the:
    • MND Clinics (Royal Stoke and County Hospitals) where Consultants and Specialist Nurses from Neurology, Respiratory Medicine and Palliative Medicine are available.
    • MND Specialist Nurse-led clinics. Home visits are also provided by the Nurses when needed.
    • Respiratory / Ventilation Specialist Nurse clinics and home visits when needed.
    • Telephone and video consultations may also be offered when clinically appropriate.
  • Telephone support from the team (including MND Coordinator) in between clinic and home visit appointments as required.
  • Specialist inpatient respiratory care when needed, including for the placement of feeding tubes which some people with MND wish to have.
  • We work closely with many colleagues from other services. These may be from other hospital services or community health services, as well as our colleagues in social care and hospices.
  • Our aim is that people receive coordinated care and quick access to the services they need, when they need them. 
  • We also work collaboratively with the MND Association (national charity) who have supported the development of our Care and Research Network and who fund some of the work we do.  
  • Our Care & Research Network was officially launched by the Princess Royal at a celebratory event held at Wedgwood Visitor Centre in June 2019, although a lot of support to people with MND had been provided by UHNM prior to this.

  • Our key team members are:  
      • Neurologists: Dr Jonathan Partridge (Network Co-Director) and Dr Thomas Lambert (Network Co-Director)
      • Respiratory Consultant Physician: Dr Naveed Mustfa (Network Co-Director) and Dr Abdi Ali
      • Palliative Medicine Consultants: Dr Sarah Kelt (Network Co-Director) and Dr Caroline Bruckner-Holt
      • MND Coordinator: Michele Quaile
      • MND Clinical Nurse Specialists Fran Tatton (including Research) and Nicola Smith
      • Ventilation Clinical Nurse Specialist Team Lead: Sue Whitfield
      • Research Practitioner: Martin Booth
  • There are many other professionals and services involved in supporting people with MND. We work closely with them to help coordinate care & support for people with MND.

The UK MND Clinical Studies Group is the healthcare research arm of the UK Motor Neuron Disease Research Institute (UK MND RI), with researchers across the UK and patient advocacy groups working together to promote research to develop better treatments and care for people affected by MND. 

The group's mission is to bring together the expertise and enthusiasm to develop and improve both the quality of MND research across the whole of the UK, and the number of research opportunities available for people living with MND to participate in nationally.

Dr Thomas Lambert Consultant Neurologist and Co-director for the North Midlands MND Network is a member of this group. Ensuring we can provide research opportunities to all people living with MND at our care centre.

As a someone living with MND, or a caregiver for someone with MND looking for research opportunities, it can be difficult to know where to begin.

The Healthcare Research section has information about MND research studies taking place across the whole of the UK, so that you can find out about opportunities that may be available to them. You can look for opportunities either by location, or by the type of study.

There are many ways you can get involved in MND research, from filling out a survey to testing a new treatment. People living with MND, their family, carers and healthy volunteers are all needed to help researchers understand the causes of MND, and improve diagnosis, care and quality of life of people affected by the disease. Visit the MNDA Research website for more details.

Alternatively ask your MND care team about opportunities to be part of research. 

Telehealth in Motor Neuron Disease-Research (TiM-R)

TiM-R is an innovative digital platform developed by the UK MND Research Institute in collaboration with researchers from the University of Sheffield. TiM-R is designed to revolutionise how people with MND can participate in research studies. By breaking down physical barriers, the platform allows for remote participation, making it easier for patients and researchers to connect and contribute to vital MND research. 

People with MND living in the UK can join the research platform by clicking here.

People living with MND are often faced with difficult decisions for managing their symptoms and maintaining their quality of life as the disease progresses. Research projects supported by the UK MND Clinical Studies Group have led to the development of educational resources, which are now available to help patients consider which option may be best for them.

 

 

 

 

 

 

 

 

 

 

 

Genetic testing

The Universities of Sheffield and Leeds have developed decision aids to help individuals and families understand their options around genetic testing for MND, and think about the best choice for them, based on their personal values and priorities.

There are two decision aids available:

  • One for people diagnosed with MND, who are thinking about genetic testing (Genetic Testing and MND)
  • One for people with a gene change linked to MND in their family, who are thinking about predictive testing (Predictive Genetic Testing and MND)

Both are available online and as downloadable versions to use offline here myMNDgenetest

  • Motor Neurone Disease (MND) is a condition which affects the nerves (motor neurones) in the brain and spinal cord. The messages from the motor neurones gradually stop reaching the muscles. This means that MND can affect how someone walks, talks, eats, drinks, breathes and uses their hands. Some people also experience changes to their thinking and behaviour.
  • MND affects everyone differently. People with MND will not all experience the same symptoms or develop symptoms in the same order.  Also, in different people, the condition progresses at varying speeds, which can make the course of the disease difficult to predict.
  • Unfortunately, MND is life-shortening and there is no cure. Although the disease will progress with time, symptoms can be managed to help achieve the best possible quality of life. 
  • We aim to support people living with MND at every part of their journey. We try to make sure people with MND have the best possible symptom management, as well as access to the practical and emotional support that they may need.

 

For further information about Motor Neurone Disease, please see the MND Association website

If you are a professional or a carer working with people with MND, the following links / training resources may be helpful for you.

  • If you would like to speak to a member of the team, in the first instance please contact Michele Quaile our MND Coordinator via:
  • We accept referrals from Neurologists and GPs for people with a confirmed diagnosis of MND. For people with a possible diagnosis of MND, please refer to Neurology at UHNM, requesting urgent input from the MND Care & Research Network Neurologists. For queries regarding referrals (especially if urgent), please contact Michele Quaile (MND Coordinator) on the contact details above.
  • You may also wish to contact the MND Association (national charity) for support and information by ringing their helpline MND Connect 0808 802 6262

http://www.uhnm.nhs.uk/our-services/neurosciences/