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.

Research is an important part of the work that we do. We are keen to create opportunities for people with MND to participate in research.

Current research:

  • A Multi-arm, Adaptive, Group-sequential trial NETwork to evaluate drug efficacy in patients with Amyotrophic Lateral Sclerosis (MAGNET)

    Sub-protocol title: Randomized double-blind placebo-controlled phase 3 trial of Lithium Carbonate in Amyotrophic Lateral Sclerosis 

    Research summary

    The aim of this study is to simultaneously investigate the efficacy and safety of multiple drugs for ALS (Amyotrophic Lateral Sclerosis). We do this by using so-called 'study arms'. Each study arm investigates the efficacy and safety of one drug or a combination of drugs. Once it is clear which arm of the study you are participating in, you will be assigned a drug or placebo by drawing lots. A placebo is a substance without an active substance, a 'fake substance'.

    Currently one arm is active that investigates the effect of lithium carbonate vs placebo in ALS. Lithium is a substance currently registered for use in bipolar disorders. This is a psychiatric disease that causes severe mood swings. Lithium affects multiple biological mechanisms involved in ALS. Previous research has shown that the drug is not effective in all patients with ALS, but may be beneficial in patients with a variation in the UNC13A gene (1 in 6 patients has this variation). Lithium is not currently being prescribed for ALS outside of this study.

    More information https://www.mndcsg.org.uk/healthcare-research/studies/magnet

    • TONiC: Trajectories of Outcome in Neurological Conditions.

      Examining the factors influencing quality of life in neurological conditions.

      TONiC (Trajectories of Outcome in Neurological Conditions) is the largest study in the UK examining the factors that influence quality of life in patients with neurological conditions, including MND. TONiC aims to have a significant and positive impact on the lives of all patients living with neurological conditions, regardless of symptoms, stage of illness, age or social status.

      More Information: https://tonic.thewaltoncentre.nhs.uk/
      Email martin.booth4@nhs.net 

    • OptiCALS trail - The purpose of this study is to test a support package (the ‘OptiCALS’ intervention) designed to improve nutritional management for people living with amyotrophic lateral sclerosis (ALS), also known as motor neurone disease.

      Little is currently known regarding how food intake affects ALS and there is a lack of guidance for patients and healthcare professionals on weight and nutrition in ALS. Evidence from small studies suggests better nutrition helps people with ALS live for longer. In light of this, we have designed a web portal called OptiCALS that people with ALS can use. The OptiCALS intervention has been designed to help people with ALS receive the best diet at the most appropriate time, in the most cost-effective manner. The package will include a range of materials including videos, information, advice and interactive tools designed to assist people with ALS to optimise their nutrition. This will be provided alongside support from a healthcare professional. We will test if using OptiCALS helps people with ALS live for longer than those who do not use OptiCALS. With link to additional information https://www.mndcsg.org.uk/clinical-research/research-studies/opticals-rct

  • The MND Register is a national database of people with MND. People with MND (under the care of our MND Care Network Neurologists) are added to the Register. They are informed of this and have the choice to opt out if they do not want to be on the Register. Opting out does not affect the clinical care provided by the MND Team.  The MND Association also have information regarding the MND Register on their website
  • For more information about our MND Care & Research Network’s involvement in MND research, please contact Martin Booth (Research Practitioner) on 01782  675393 or email martin.booth@uhnm.nhs.uk
  • Or for more information about MND Research, please see the UK MND Clinical Studies Group website or the MND Association Research page on the MND Association website.

  • 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/