People living with neurological conditions like MS, Parkinson’s and MND could benefit from quicker diagnosis and better coordinated care as part of a new NHS initiative, which is also set to free up millions of pounds to reinvest in patient care.
The MS Trust has joined forces with NHS experts and six other leading charities (Parkinson’s UK, MS Society, MND Association, Sue Ryder, MSA Trust and PSP Association) to produce a toolkit that will help local health groups improve services for people living with neurological conditions in England.
For MS, this means improving the efficiency of disease modifying drug (DMD) management, employing data and technology to free up the valuable time of MS specialists, holistic support for people with advanced MS and more of an emphasis on MS specialists from different fields working together.
It’s estimated that up to 2,500 emergency admissions to hospital a year could be avoided for patients with neurological conditions as a result, with up to £10 million freed up to fund improved services.
The guidance also aims to help Clinical Commissioning Groups (CCGs) deliver faster diagnosis and treatment for progressive neurological conditions, better join-up the different health professionals and organisations supporting each individual, and improve access to specialist physical and mental health care. People will also be supported to better understand and manage their symptoms at home, and to take a more informed and active role in making decisions about the treatment they receive.
Dawn Chamberlain, Programme Director - Clinical Improvement at NHS England and NHS Improvement, said:
This is an opportunity for the NHS to work directly with patients and their families to deliver better care closer to home for the thousands of people with progressive neurological conditions. As they work with staff, patients and stakeholders to implement the NHS Long Term Plan, this toolkit provides the information local health leaders need to understand how to deliver high quality neurology services. Many areas are already providing high quality care in line with best practice, and by supporting others to come up to the same standard, we can deliver faster, more joined-up and better care for thousands more people – supporting them to stay well in their own homes.
The Progressive Neurological Conditions Toolkit is the latest publication from the NHS RightCare programme, which was set up to provide support to local CCGs to improve care in key areas, based on the best-available data, evidence and intelligence.
Alongside the best practice guidance, CCGs will receive extensive data on local performance compared to the highest-performing areas nationally, and tailored support to improve their offer to patients.
The MS Trust will continue to work closely with the other charities involved to support efforts to see the toolkit implemented effectively, with the shared aim of improving care for everyone living with a progressive neurological condition in England.
Paru Naik, Health Professionals Programme Manager at the MS Trust, added:
Services have been failing people living with progressive neurological conditions for far too long. This inequality is simply not fair. This toolkit provides practical guidance to help clinical commissioning groups (CCGs) deliver the care and support people living with conditions like MS, Parkinson's and MND need and deserve, and ultimately reduce emergency hospital admissions for this group of people. We are urging every single CCG to work with the seven charities involved to implement this guidance and ensure people with progressive neurological conditions are not neglected.
Meet Claire, who lives with MS and will benefit from the new RightCare toolkit
Claire Plackett, 54, from Croydon, was diagnosed with relapsing MS in February 2015. Claire’s main symptoms were tingling, numbness, cognitive problems, and double vision, but it was 17 years before she received a correct diagnosis. In spite of repeated trips to the neurologist, MS was never spotted until a bad fall prompted Claire to see a consultant privately. She was diagnosed with MS two days later.
Today Claire is treated at St George’s MS service, which is listed in the new RightCare toolkit as an example of MS services done well.
Claire says: “I have blood tests once every three months to check my medicine is working, but in the past always had to join the general queue. It would take hours and hours, and was physically very draining. But now two days a week there’s an MS phlebotomist there taking blood just for MS patients. The service is incredibly important to me because it makes life so much easier.
“St George’s also has an MS co-ordinator, and she’s literally like magic. If you have any problems you can contact her and she’s always on hand to put your mind at rest. Having MS comes with a lot of challenges but now I know there is always somebody who will be there for me.
“MS affects over 130,000 of us in the UK, but services here are generally very inconsistent. Getting the right support can make a huge difference to your life and I feel incredibly lucky, because I honestly don’t know how I would cope, or how my MS would be, if things had been different.”
