Multiple sclerosis, or MS, is a cruel condition, affecting more than 100,000 people across the UK. It's different for everyone, but most are diagnosed with a form that comes and goes. Relapses can last for days, weeks or months, varying in severity and the problems they present. One day you can be fine, the next you can temporarily lose your sight, be unable to move or become overwhelmed by extreme fatigue. Its unpredictability is often the only thing you can count on.
The good news is there are increasingly more treatment options for people with this type of MS, which typically begins in your 20s or 30s and affects three times as many women as men. These treatments can reduce the severity and frequency of relapses. The less good news is the UK is sadly one of the worst places in Europe in providing access to these treatments, with six in 10 of those eligible not taking them - and there's also huge variation within our borders.
If you have MS and live in Northern Ireland, you're more than twice as likely to be taking a disease modifying treatment (DMD) than if you live in Wales. Rates in parts of southern England are also shockingly low.
Earlier this year I visited Belfast to learn more about their model of MS services. The visit was with the Parliamentary Group for MS, and was organised by the MS Society following their report which showed the extent of variation in MS services across the UK. The charity has this week launched a new campaign, Treat Me Right, calling for all people with MS to receive the right treatment at the right time, wherever they live.
As chair of the Parliamentary Group, I wanted to see if the positive aspects of services in Northern Ireland could be replicated elsewhere, and equally, what gaps remain. In speaking to neurologists, MS nurses, commissioners and members of the Belfast Trust Executive Board, it was clear much of the achievements in Belfast have been due to the drive and commitment of the staff; the collegial nature of the multidisciplinary team was particularly impressive.
MS nurses have played a vital role - Northern Ireland has been able to maintain 80% compliance rates for DMDs, largely due to the guidance and specialist knowledge provided by MS nurses. The nurses there also support people with MS out of hours - there's an email service, telephone service, and in particularly severe cases, mobile numbers are given to patients. Demand is however increasing and it's becoming more difficult to staff this service.
The UK has some of the best MS nurses in Europe, but posts have been threatened in recent years due to financial pressures. As such a vital resource, clearly MS nurses should be invested in throughout the UK.
We also visited Musgrave Park Hospital, a new neuro-rehabilitative centre. The facilities were state of the art, and the attention to detail to ensure care provided to patients was tailored to them was astounding. The hospital also conducts regular patient and carer forums, allowing patients to input into future service plans. Personalisation of treatment and support and meaningful patient involvement are goals we all should aspire to.
That's not to say shortcomings don't exist in Northern Ireland. Specialist provision is disparate and emotional support and counselling for people with MS is not as good as it could be. Symptom management treatments, which can help with symptoms such as mobility and muscle spasms, are also hard to come by in Northern Ireland, and the country often experiences delays in making new DMDs available.
The first oral treatment available for relapsing MS, was only routinely available in Northern Ireland months after the rest of the UK. But even under tight financial constraints, the services in Northern Ireland and their high DMD treatment rates, provide clues about what can be achieved.
It's unacceptable that so many people with MS are not able to access the treatment, services and support they require as a result of where they live and I'd urge people to support the MS Society's Treat Me Right campaign.
I look forward to working with ministers, NHS England, NICE and professional bodies to discuss our Parliamentary Group's findings so that we can seize this opportunity and work to improve the lives of the thousands of people with MS across the UK.