Bernadette Porter is MS Consultant Nurse at the National Hospital for Neurology and Neurosurgery. This summer she was awarded an honorary MBE for services to nursing in the Queen’s birthday honours. A couple of weeks ago we had a chat with Bernadette about her work and her honour and an edited version appears in the latest edition of our newsletter Open Door. Here we publish the full version of our conversation.
Was it a surprise to be honoured?
Absolutely! I had finished a really busy clinic – there was someone at the door, I was leaving down my notes on my desk, the phone was ringing. I was just thinking “just let me answer this phone”. The lady said she was calling from the Foreign Office, I thought there must be a problem with my passport. I was completely confused. It was a complete shock!
People have been getting in touch with my family over there saying this is wonderful for raising the profile of MS. It’s been a good thing for the whole MS community.
How did your family and colleagues react?
They’re so thrilled. Obviously family would be. But the thing that’s so amazing here at Queen Square and across UCLH – it’s been such a morale booster. Everyone has been very energised by it. One of the nicest things was people with MS writing to me with congratulations and sending me lovely cards and well wishes. I’m delighted that it’s raising the profile of MS.
I’m from Donegal which has one of the highest incidences of MS in the world and I was interviewed by the local radio station – and lots of people got engaged in the discussion. People have been getting in touch with my family over there saying this is wonderful for raising the profile of MS. It’s been a good thing for the whole MS community.
What’s the biggest change you’ve seen in your time as an MS nurse?
The availability of the disease-modifying drugs, obviously. But also the shift from the in-patient, ward-based care, to out-patient. The shift for the future now is to get care from out-patients and hospitals into the community.
What are you proudest of?
Probably what we’ve done with the MS Trust and Royal College of Nursing on the competency-based work. When I started there were a few other nurses around the UK and we helped and supported each other but there were no frameworks in place. We didn’t have competency frameworks. We didn’t have the week’s training in Hitchin that the MS Trust now offers. Being able to create an infrastructure to train MS nurses of the future and to grow the specialism: that’s one of the best things I’ve ever contributed to.
What has inspired you?
People with MS inspire me. Living with MS is such a challenge. The people I meet are so dignified in how they deal with the condition, no matter what. When we’re planning our day or juggling things, we may feel that we’ve got a bit of stress or difficulties but that’s pretty low on the scale compared to the challenges someone with MS has to face. So yes, they inspire me to keep going.
How do you measure the impact your service has made?
You have to stay close to your patient group. We ask for feedback all the time. You have to be brave, sometimes, when you know your service isn’t very good, that’s the time you have to ask for the feedback. You have to be courageous about that. Before we set up the NeuroResponse telephone line we relied on answer machines. We knew it was a poor service because we were busy in clinics. So we did an audit and patient satisfaction was low at 49 per cent. That was very hard to take but we knew it wasn’t good for the patients, nor was it good for us. We used that information then to change how we delivered the service. So we set up Neuro Response and opened up a phone line, Monday to Friday, 9 til 1. We responded to the problem by creating a a new model. Our satisfaction rating is now up to 93 per cent. The patient voice is still so powerful. So we need to say “this isn’t good enough. Our patients have told us. We need to make a difference, we need to change how we work”. I am not saying it is easy, it can be very very difficult. Sometimes in the NHS it depends what manager is in post at the timeand what their focus and goal is. It is our job as senior nurses to keep bringing the patient voice to the board room and decision makers; that can help get things done.
People want accurate, factual information balanced by hope. They want to know how other people with MS manage, how other people with MS make decisions.
What’s the most important thing to tell someone who’s just been diagnosed?
People want accurate, factual information balanced by hope. They want to know how other people with MS manage, how other people with MS make decisions. I think it is important to give each individual information that helps them make sense of their personal situation.
I sometimes worry that as health professionals we give too much information. We may think we are doing good by giving lots of booklets and advice, however I’m not sure that’s right. I think actually people need a little bit of time on their own to work out their worries and concerns, and then we should be there to listen and help make sense of the situation.
As a basic standard I think people should not leave a hospital without at least a contact number, and information to say “you’ve got this, but you’re not alone”. And for someone to ring them within a day or so, and say, “look do you want to come and meet me?”.
I think that then, when you meet the person, explaining what’s going on in their body helps. I think people like to visualise and learn about what’s happening in their body using pictures. Every week people tell me that it is good to have someone explain what is going on with a few pictures of nerve cells, immune cells and so on.
People want to know how they can take control, take charge, that’s very important. They want to know that there are other people around like them. Most like to link, to other people, to the MS Trust, to the other charities.
Nurses are well placed to signpost but it’s a very individual thing. Some people want it all on day of diagnosis that day. Other people tell me that they’re so shocked that they really want to leave and come back when they’re in a better place and can receive the information. It’s about working with each individual to meet their personal needs.
What difference has the MS Trust made to me? Oh huge. It’s supported my professional growth.
What developments in MS care excite you?
The new drugs in the pipeline for relapsing remitting disease, the secondary progressive trials that Dr Jeremy Chataway and others are doing, and Professor Alan Thompson’s new International Boards work that focus on Primary Progressive MS. For me I’d have to also say telecare models – that we can start using technology a bit better. Like everyone having their own electronic health records. Being able to have your electronic prescription. Just being in charge of your health in the same way you’re in charge of your money or your holidays. The latest NHS IT strategy suggests that by 2018 we will all have our own health records and everything will be electronic. That’s a fantastic way forward.
What difference has the MS Trust made to you?
Oh huge. It’s supported my professional growth. I was awarded a scholarship which enabled me to complete my masters in neuroscience, which was a fantastic support. And galvanising the community of MS nurses, especially in the early days when there was only a few of us and we were very isolated. The Trust acted as a broker and a social hub that kept us together.
Is it hard to clock off at the end of the day?
I have lots of creative friends who don’t work in healthcare and I spend time with them which is refreshing and stimulating. And I love to cook and travel. So I have plenty to distract me in my free time