Sorry to disappoint

S

Many of you who have requested an opinion from Barts-MS, and don’t live in the Barts-MS catchment area, have discovered that your referral to our service has been rejected. I have a handful of complaints from patients wanting to see me in the last week or so. The reason is that we can’t cope and we are now putting our existing patients at risk!

We have just completed a review of our MS Services and have come to the conclusion that without more resources we are unable to cope with the rising demand.

As you can see from the graph above the number of patients on DMTs at Barts-MS has quintupled in the last 7 years. Hidden in these figures is the fact that we have had no increase in staff to manage this increased caseload. In addition, close to 70% of our patients on DMTs are out-of-area. These out-of-area patients are being managed by our service rather than their local MS team. The consequences of this are that the quality of our MS service is suffering and we are now having difficulty looking after our ‘own patients’.

Another factor that is going to have a big impact on our service is the licensing of DMTs for active progressive MS, i.e. ocrelizumab for PPMS and siponimod for SPMS. This means more visits, more MRI monitoring and many more patients on DMTs. Something has to give!

Increasing our staff complement is not easy either. Barts Health NHS Trust has been under special measures for several years and has one of the largest deficits in England. Business cases to expand our MS Services get submitted and are held-up for years. For example, it has taken us over 3 years to get our Trust to support an MS clinical nurse specialist in Newham. This is despite the fact that the salary of this post will be covered by the MS Trust for the initial two years and that 50% of the salary after that will be covered by the local clinical commissioning group or CCG.

To try and address the service issues we have just submitted a grant to the Big Lottery Fund to transform our service into a distributed network. The configuration of the service will be a co-design project with patients, GPs and HCPs working with people with MS. The good news is that we are doing this with All-Together-Better, an innovative NHS team, who have experience in transforming services.

So Barts-MS would like to apologise to you all that we are not going to be able to take on the management and treatment of any more out-of-area patients with MS unless something drastically changes with the funding model in the NHS.

We hope you understand.

CoI: multiple

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

39 comments

  • Bravo to you for trying so hard with limited resources! It seems to me that worldwide we are heading for a heap of hurt as more and more people get diagnosed with MS and are put on treatment. Treatment that often takes much monitoring and assessment.
    Here in Nova Scotia, Canada, we’re suffering the same lack of resources – and our MS Research Unit ends up losing valuable team members to burn out and overall weariness. I wish there was a way to reduce my own burden but I also want to ensure I’m on the right treatment for me – so I bleat. I feel guilty, but I bleat.
    So bless you and your colleagues for all that you do and I hope someone soon sees that there’s a tidal wave of MS arriving for some reason, and we need to prepare for it!

    • Not sure, but if the NHS wants to empower patients to seek out-of-area second opinions they need to supply the necessary resources for this to occur and to make sure in-area patients are not disadvantaged. This is something we can look at in our MS Variance Raising the Bar initiative.

  • Is this compatible with the NHS’ patient choice programme?

    https://www.england.nhs.uk/patient-choice/

    Patient choice programme

    NHS England’s goal is to significantly improve patient choice by 2020. To achieve this, a major programme of work has been launched to achieve a radical step-up in the offer, awareness, uptake and operation of patient choice across the NHS. This work is being led by a dedicated team called the Patient Choice Unit.

    Our vision for patient choice by 2020 is that:

    All patients are aware of the choices available to them, particularly where these are legal rights and have the information they need to make meaningful choices,

    All GPs/referrers discuss the different treatment options available to patients, include them in shared decision making, and offer choice to patients,

    All providers make good quality, up to date information about their services available and accept all appropriate patient referrals in line with the NHS Standard Contract,

    All commissioners assess how well choice is working within their CCG and put improvement plans in place to address areas that need strengthening,

    All opportunities to extend the operation of choice beyond existing standards are explored and implemented.
    Clinical commissioning groups (CCGs) have a duty to enable patients to make choices, and to promote their involvement in decisions related to their care or treatment. NHS England will work alongside CCGs to help them meet their legal responsibilities and build on their offer of choice to patients, to ensure that choices are meaningful and deliver positive improvements to patient outcomes including patient experience of the services they access and use.

    • Hi Prof G, you have very kindly taken the time to inform us all about the constraints & difficulties with an ever-increasing population & sadly showing how many pwms you currently treat! I do believe the patient charter was written with good intentions but it is now not fit for purpose in the ‘real world – it doesn’t work for most people & when you’re unwell & distressed, you certainly lack the appetite to pursue, other opinions & the long road to re-referral!. That said, some more dynamic people with more time able HCPs might adhere to it but in my world, the difficulty is trying to get to see HCPs, especially your own Neurologist – (I was in hospital for 3 days & my Neuro & Nurse, sadly didn’t get the message/email – I came home & had to call for an emergency appmt which took 10 days!) So, I’m glad you’ve been upfront with us all. If there’s a specialised centre for MS of course everyone wants to go there & be seen by the best of the best. The NHS is amazing & I’m so grateful for the treatment I do receive, but there is a great need for so much more thoughts in organising, managing & how many patients you can take on before it gets to breaking point! We can then possibly adhere to the patient charter. I’d very much like it if you sent your above post to social media for all to read, especially the Government! The All-Together-Better initiative whereby you have consulted all parties is definitely the way forward & we need to learn from others & keep talking about how to improve services & help support people with neurological diseases. Ideas, time, communication, support, understanding & care, that’s not too much to ask, if things aren’t bogged down with bureaucracy & dinosaurs 🙂

  • I’m at charring Cross. And really happy with how my ms is being managed. Was on Alemtuzumab after 1 year having failed on tecfidera. The head neurologist is similar in his opinion on attacking ms hard like barts. But I still feel assured if I needed to transfer to barts I could. Thank you barts ms for being around.

    • I am sure Charing Cross (Imperial NHS Trust) are in a similar situation to us when it comes to patient numbers. We have an MS epidemic and austerity NHS wants us to do more with less, but we are getting to a point where it is not safe to do more with less.

      • Yes charring Cross is completely over loaded. Speaking to my consultant he says the epidemic is due to explosion of MS among ethnic minorities. When I go for my yearly appointment. Those waiting are more ethnic minorities then Caucasians. I myself am Indian. Trials now need to take place to reflect the demographics of MS population. To ensure new meds are effective across all minorities. The only country that seems to be immune to MS inspite having Western levels of wealth and lifestyle is Japan and South Asia.

        • Do people there get Epstein Barr Virus (EBV)/glandular fever and or herpes? What is the culture for drinking alcohol? Has it become like the UK where people drink until they can hardly stand up (men and women) and then kiss anything with a pulse?

          • I’m not sure about drinking. But they’re Ms rate is 9 per 100000. Here it’s 1 in 600. So it may be diet and maybe they are more genetically resistant to herpes. Who knows.

          • If your implying sexual promiscuity is cause for the ms epidemic then how do you explain Thailand? This is like saying when HIV first became a epidemic, it was a punishment from God for lgbt community practising unnatural sex. Hmmmm, for supremely intelligent, all knowing, timeless being seems a little vindictive. Then why create free will in the first place?

        • ANONOYMOUS
          I’m not “implying” anything about sexual promiscuity.

          It’s an observation.

          I know when I got glandular fever and how I got it (drunken kissing of random strangers on a night out). Epstein Barr Virus is a virus passed on by the passing of bodily fluids, especially salivia as well as things like drinking glasses, toothbrushes etc. One person in a household could infect everyone in it. It’s not rocket science.

          @Mousedoctor and your comment of “I’m sure Iranian women are drinking til they drop”.What about the men? We all know that in countries like that the men do what they like, when they like and with whom they like, and the women walk ten foot behind them wearing clothing that conceals them.
          If it turns out MS IS caused by EBV then acknowledging that may be the first step to containing/eradicating it don’t you think?

          • Hi Ali thanks for the clarification. Now u explained, yes it does make sense what you say. If virus is truly the cause then yes it can be passed with contact with someone who is affected. While I was in hospital having first round of Alemtuzumab. A elderly gentlemen was admitted with Ms at age of 70. He told me he looked after his wife who had ms for 30 years and now his go it. Yet none of the doctors thought that was weird. To me it’s conclusive proof you can catch ms.

          • You don’t “catch” MS. Most people have EBV. You need genetic susceptibility as well, and probably other risk factors.

  • The issues ProfG describes are experienced every where in the UK, and beyond as we have seen from other posts. For example, Plymouth MS, which covers a populations much smaller than BartsMS has seen our MS database increase from 1403 to 1710 in 2 yrs. We have around 800 on disease modifying treatment and see people from all over Devon and Cornwall (and beyond) rather than just the Plymouth locality. Many of the Plymouth MS team are funded by research or industry monies. So not only is the NHS unable to cope – its being significantly propped up by none-NHS funding. We have the same issue re special measures. And our scenario is perhaps not helped by a “block contract”. But as yet, we have not turned any referral, self or otherwise, away.

    Another issue ProfG hasn’t mentioned – perhaps because its more acute in the sticks than the capital – is recruitment challenges. Even when we do have posts they are hard to fill, let alone fill with MS-experienced people. We are trying to address some of these issues by changing the way we work and establishing a peninsula MS service. But we are all struggling to keep up, and as ProfG rightly says, something has to give.

    The sadness is that UK MSers could be diagnosed and treated so much better with appropriate resourcing, and this would lead to significant long term NHS and social care savings.

    .

    • To anonymous who replied to me you can’t catch ms. The probability of catching ms is 1 in 600. Then the probabiltiy of the carer catching ms is statistically very high. Problem is neurologist or biomedical scientist are not trained mathematicians. I am.

    • Surely a countrywide register (not just Scotland) would assist in adding weight to the case for more funding/provision?! I’m fed up of year after year constant reference to 100,000 as the number of us with MS. I suspect the number is way higher and growing and this needs to be adequately reflected. Surely it must be possible to roll out the Scotland system?

  • To anonymous who replied to me you can’t catch ms. The probability of catching ms is 1 in 600. Then the probabiltiy of the carer catching ms is statistically very high. Problem is neurologist or biomedical scientist are not trained mathematicians. I am.

      • Cases of MS are rising exponentially. Genetic and environmental factors are not changing exponentially. It sounds like epidemic. Normal causes are viruses and bacteria.. Hint hint knudge Knudge…

        • I think you need to do a lot more reading on science, biology. And start with the basic information on MS on the UK MS Trust website. Spreading alarmist nonsense about MS is not helpful.

          • Nope. I don’t need to. Alarmist nonsense is the reason why there’s still no cure for MS after 30byeara of research. Again its because my understanding of biology and biological processes Ive come to the conclusion exponential rise in MS cannot be explained simply by environmental factors and genetics. Those factors were always there. This is simply not a stand alone auto immune disease. There’s a trigger. Ie virus which is driving the exponential rise. With populations mixing and causing the virus to spread. For instance. A study shows those in the armed forces are at higher risk of developing ms. Maybe because of the close quarters of their lifestyle? Knudge Knudge wink wink?

      • Not looking to be contentious or force my opinion on anyone else by deriding their thought process because of lack of imagination my part. But the article published by this very blog partiay vindicates my opinion by no other than Prof G. For me his the gold standard for giving credit or discredit a hypothesis. I guess its true gest minds do think alike. Hmm not gloating…

        http://multiple-sclerosis-research.blogspot.com/2014/01/is-ms-sexually-transmitted.html?m=1

          • Oakley dokley. I guess your probably a eminent scientist of world class standing and believe Prof G opinion is irrelevant if EBV is the cause of MS. then exchange of bodily fluids can cause transmission. Including sex. I bow to your “wisdom” and “intellect”. All knowing snd all seeing OZ.

        • You’re the one claiming to be some sort of genius with the answer, whilst stating nothing new / thought through / developed / well researched. Good luck anyway. Cheers.

          • Hmmm. Pot calling the kettle black?
            Jeeez.
            Very simplistic
            Relativity is more than that without example. I gave a example.
            Old mat..

            Hey your welcome to make one liners.

            I am careful with my thought processes with this ms demon on my back. Despite of this I continue to keep thought and intellect independent of dogma and well established research. Breakthroughs happen only in new avenues of research where established chemical/biological processes are ignored to make new discoveries. You got on your high horse first. I just kept stepping up gears… Good luck to you as well.

  • It’s not only Neurology. Barts is a specialist hospital for Cardiology and Cancer. Other London hospitals specialise in Urology and Heptology. There lies the issue. If you live in the catchment area of these Trusts, you queue behind someone outside the area for your first referral. So you can wait months even if it’s an urgent suspected cancer.

  • “Very unfortunate article”

    Maybe. But until Cause and cure for MS is found. All bets are off. So called experts have found nothing after 30 years of research. Except repurposed drugs that will kill you anyways by destroying your immune system.

By Prof G

Translate

Categories

Recent Posts

Recent Comments

Archives