MS blog 

 

Bernie Porter04 May 2016 

MS team nominated for the first-ever British Medical Journal Neurology Team of the year award

I am proud to announce that we were recently shortlisted finalists for the first-ever British Medical Journal Neurology Team of the year award. It was sponsored by the Association of British Neurologists. Click here to find out more.

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Bernie Porter10 July 2015

Neuroresponse to be rolled out throughout England

I am thrilled to have the opportunity to improve care for people living with Neurological Conditions in the UK. Click here to find out more.

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Bernie Porter22 June 2015

Working together to design MS services - Bernadette Porter, MS consultant nurse

Experienced based co-design or (EBCD as it is known to some) is everywhere at the moment. EBCD is an approach used to allow patients, their families and staff to co-design services and pathways, together, in partnership. People are promoting EBCD because unlike other traditional approaches to change, it allows everyone a chance to have their say, to have a voice. When everyone gets involved and feels involved, the creative juice flows and lots of innovative ideas are generated.

In the MS service we have used EBCD for years, even if it was not called that at the time. We have always recognised that we need to design the services together. We are very aware that we do not have the answers. We need your help to make sure we don’t waste NHS time and money creating things that are of little value to your health and care.

To create good services we need to be able to imagine what it is like to walk in your shoes, to see the service through your eyes. With your help we have been able to shape services that are useful. People with MS have been really generous and many have given up their personal time to help us design and test new models of care. Together over the years we have designed a diagnostic clinic, a relapse service, telephone clinics, nursing clinics, infusion unit, patient and family education sessions and the NeuroResponse telecare service.

We have used a variety of methods to collect your experiences including:

  • Focus groups
  • Survey Monkey
  • Gathering stories and experience from patients, family and staff in relaxed video interviews
  • Identify key touch points (positive and negative) on care journey
  • Create short films to share the impact of patient and staff experience with each other
  • All stakeholders watch films, have group discussions, come up with solutions
  • Design and implement solutions, products and activities to improve service or care pathways

Luckily the Kings Fund have created a free to use, online toolkit that means that when we want to design and deliver new ways of working that have real impact on the ground we can get on with doing so using an experienced based co-design approach. The best news is that the approach is simple, yet the results are amazingly powerful. Recently we worked with people with MS across North Central London to try to understand why people with MS were ending up at A&E with urinary infections. We spent hours talking to each other, people with MS, their families, GP’s, microbiologists, neurologists, bladder specialists, MS nurses, A&E staff and infection control teams. We then used all the conversations to identify what bits in the system are wrong and came up with a few ideas on how to fix it.

We all got together one late afternoon and shared our thoughts and designed what we thought things would look like if we could make things brilliant. It was a great evening and our final product – a new care pathway, is fantastic. We would never have come up with such a creative, intuitive, patient-facing solution if we had taken a more traditional approach. I am on the record as saying you could have locked up all the so called ‘experts’ in a room for a month and we would not have come near to this solution. I believe that if you embrace service design with an inquisitive mind and a culture of sharing experiences then you can come up with some amazing solutions. The great thing is that it is always an intelligent, fun, creative, educative, and energising journey. If you would like to join in any co-design projects please sign up on our research page.

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Bernie Porter9 June 2015

World MS Day - Bernadette Porter, MS consultant nurse

We marked World MS Day on May 27 with an open event at 33 Queen Square.

The programme included presentations from some of our leading consultants and nurse specialists, afternoon tea in the Queen Square garden, and featured stands from MS Society, MS Trust, Shift MS, the National Brain Appeal, NeuroResponse and the Disability Law Service. Patients also had the chance to get information about signing up for the latest research trials with University College London’s Institute of Neurology. 

The audience were warmly welcomed by our Chair, Richard Murley who described how the MS team have a history of working with patients and families to improve care. Richard also mentioned that a recent audit by the UCLH Governors identified that people wanted more information. As a result of that audit we created new web pages for our service which were launched to coincide with World MS Day. We also held our first WebChat earlier in the morning.

The event started with a lively performance from members of the exciting North London-based choir Eclectic Voices. There were then a series of discussion on subjects including disease modifying therapies and drugs, specialists services including bladder and spasticity clinics, understanding the pathology and physiology of MS and how the team are leading the international field in the quest to understand the mechanisms that cause disease progression. The talks were followed by Q&A sessions with a wide range of our specialist teams and therapists.

It was great seeing such a wide variety of familiar faces, including some patients that have been receiving treatment at the National Hospital for Neurology and Neurosurgery since the first disease modifying drugs were launched in 1997. It was a great day, and we received great feedback, so hopefully we will be able to hold it on an annual basis.

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