A lottery of treatment and care –MS services across the UK
2 A lottery of treatment and care – MS services across the UK A lottery of treatment and care – MS services across the UK 3ContentsWe’d like to show our appreciation to thosewithout whom we could not have completedthis report – a thank you 10,530 times over(pg. 6) to the people with MS who took thetime to respond to our research.Inside this report, you’ll find a wordfrom our Acting Chief Executive (pg. 5)followed by the executive summary (pg. 8).The remainder of the report will look intothe issues we face across the whole ofthe UK and look at how the four nations ofEngland, Wales, Northern Ireland and Scotlandcompare. We focus on: Access to medicines(pg. 10); care and support (pg. 14); financialsecurity (pg. 18); and physical and mentalwellbeing (pg. 22).Finally, we look at next steps (pg. 28), takinga look at the questions raised by our researchand what must be done (pg. 30) to addressthem and who we must bring along with us tobeat MS.And, as you’d probably expect, at the very endyou’ll find our references (pg. 32).If you only have time to take a quick lookat this report, skip straight to the executivesummary (pg. 8) and then look at what mustbe done (pg. 30).Please note that although we use theabbreviation “NHS” throughout the document,we do of course generally include HSC ofNorthern Ireland within that shorthand.
4 A lottery of treatment and care – MS services across the UK A lottery of treatment and care – MS services across the UK 5What is multiplesclerosis (MS)?Background onthe MS SocietyThe MS Society is the UK’s leading MS charity, with around38,000 members and 300 branches across the country. We’reworking to improve treatment and care to help people with MStake control of their lives.We’re working with partners around the world to fund researchthat we believe will beat MS for good. We’ve already madeimportant breakthroughs, and we’re now at the start of ageneration of MS research that holds incredible promise.While we work towards a cure, we’ll continue to fight the cornerfor people affected by MS – demanding the highest quality careand support, wherever they live.With your support, we will beat MS.300branches acrossthe countryApproximately 100,000 people in the UK havemultiple sclerosis. Every one of them sharesthe uncertainty of life with MS.MS attacks at random andmany of the symptoms areinvisible to others. It affectsalmost three times as manywomen as men, and you’reusually diagnosed in your20s or 30s; news that can bescary and heartbreaking.People with MS live with greatuncertainty, not knowing fromone day to the next whetherthey will be able to move, tosee or to live even a remotelynormal life.There are several forms ofMS and it is different foreveryone – symptoms mightinclude fatigue,vision problems, difficultieswalking or speaking, tremors,dizziness, memory problemsand depression. It can leadto severe and permanentdisability. The most commonform is relapsing remittingMS (RRMS), which affectsaround 85 per cent of thosediagnosed. Symptomsappear – a relapse – and thenfade away, either partially orcompletely. A relapse maylast for a few hours, or manymonths. It might be relativelymild or require treatment inhospital. Many people make agood recovery, but around halfexperience lingering problems.Most go on to develop‘secondary progressiveMS’ – a sustained buildup of disability over time,independent of any relapses.Around 10-15 per cent ofpeople are diagnosed with‘primary progressive MS’– in which the conditiongradually worsens from thepoint of diagnosis, rather thanappearing as sudden attacksthat come and go.The causes of MS areunknown and there is currentlyno cure. Although biomedicalresearch is paving the waytowards potential newtreatments in the future, thetreatments available todaydon’t work for everyone anddon’t work all the time.This report shouldbe a sobering wake-up call for all of usworking to improvethe lives of peoplewith MS in the UK.When we began thisunprecedented researchproject late last year –gathering evidence aboutaccess to health, social care,employment and welfareservices from more peoplewith MS than ever before –we anticipated we woulduncover shortcomings anddisparities in the servicesoffered from one part of thecountry to another.We could not, however, haveanticipated the scale of someof those shortcomings or thedegree to which access toservices would vary.Some of the statistics inthis report are nothing shortof shameful. Perhaps mostconcerning is that as manyas six out of 10 people withrelapsing forms of MS arecurrently going without anyform of disease modifyingtreatment. Across Europe,only Poland and Romaniafare worse.Worryingly, our reportconsistently shows that themore financially worse offpeople with MS are, the lesslikely they are to get accessto services they need –whether that is social care,physiotherapy, mood andemotional support, or aidsand adaptations, such aswheelchairs.There are areas where thereis better news, and somebeacons of hope that weshould highlight and celebrate.It’s reassuring, for example,that on the whole, people withMS appear to have accessto a broad range of MSspecialists – although one infive rarely or never find iteasy to see a specialist whenthey need to.Northern Ireland is leadingthe way in this area – it’s theonly place in the UK wheremost people with MS seea neurologist or MS nursefor a routine review everysix months. This should bereplicated across the UK sothat people have regular andtimely access to a range ofMS specialists throughouttheir lives, providing specialistinput, information and referralto relevant services whenthey’re needed most.As the MS Society marks its60th anniversary in 2013, wecan’t help but reflect on theundeniable improvementswe’ve witnessed in the wayMS is diagnosed and treatedover the last 10 – 20 years.But the pace of improvementis far too slow. More needs tobe done to ensure servicesare more responsive, timelyand better meet the needs ofpeople with MS.If we want the UK to be aplace where people with MScan be supported to takeback control and live the full,independent lives to whichthey are entitled, we urgedecision makers at a local andnational level to take heedof this report and act on itsrecommendations.Patricia GordonActing Chief ExecutiveA wordfrom ourActing ChiefExecutive
6 A lottery of treatment and care – MS services across the UK A lottery of treatment and care – MS services across the UK 7Thank you, 10,530 times overWorking togetherThis report would not have beenpossible without the 10,530people who gave their time tocomplete and return our survey.The views of our members are the backboneof this report, which illustrates their needs andhighlights the areas where health and socialcare services are falling short.We would also like to thank our members whohave shared their stories and helped us showhow the statistics reflect real life. Our researchexposes the current lottery of treatment andcare, but their contributions articulate itseveryday impact more eloquently than datacould ever do.We would like to thank the organisations whoattended our MS Summit in February 2013.Their contributions have helped determine manyof our UK recommendations featured in thisreport. Their expertise and ongoing support hasbeen invaluable.The organisations listed below attended theMS Summit and endorse our UK analysis andrecommendations. We look forward to workingwith them, and others, over the coming years toimplement the recommendations in this report.Strength in numbersAccurate information is essentialto make informed choices andintelligent recommendations.So, in autumn 2012, we asked members of theMS Society who have MS to help us create adetailed picture of access to a range of healthand social care services, relevant to them, indifferent areas of the UK.More than 10,000 people over the age of 18who have MS responded to the postal survey.We asked what services they need and to whatextent these needs had been met over theprevious 12 months.In this report we look at some of the importantearly findings in the wider policy context. Furtheranalysis of the data will continue.The response rate was 44 per cent, which is verygood indeed and gives us nationally and, formost of the UK, locally significant results.The demographics of those who responded areas we would expect. In the UK around threetimes as many women as men have MS, and oursurvey respondents reflect this. Our respondentswere slightly older than the MS population,reflecting our membership, but people of allages and all types of MS responded. Furtherinformation on the methodology of our survey isprovided in the technical report, available fromwww.mssociety.org.uk1% 18 – 3024% 31 – 5047% 51 – 6528% over 6525% Male75% Female20% Primary progressive MS15% Secondary progressive MS (with relapses)24% Secondary progressive MS (without relapses)31% Relapsing remitting MS11% Don’t knowGenderType of MSAgeThe response rate, absolute numbers ofrespondents and the broad demographicdistribution of respondents give usconfidence that our findings presentan accurate picture of treatment andcare across the UK, and provide a clearmandate for action.44%response rate
8 A lottery of treatment and care – MS services across the UK A lottery of treatment and care – MS services across the UK 9Executive SummaryAccess toMS medicines• Six out of 10 eligible people do not takedisease modifying treatments (DMTs).• Two symptom management treatments hadbeen recently licensed for MS at the time ofour research – but only one in 50 people withMS takes these.• If you have MS and live in Northern Irelandyou are more than twice as likely to betaking a DMT than if you live in Wales.• Across Europe, only Poland and Romaniahave a smaller proportion of people withMS taking DMTs.• Those who feel they have enoughinformation about medicines are 32 per centmore likely to be taking a DMT. (59 per centcompared to 27 per cent).• Access to specialists also plays a key role –those with access to an MS nurseor neurologist are more than twice as likelyto be taking a DMT.We want people with MS in the UK to haveaccess to medicines that are among the bestin Europe, not the worst, and to see an end tothe current postcode – and passport – lotteryof access.To do this we are calling on governmentsacross the UK to ensure every person withMS has a personalised treatment, careand support plan, with two comprehensivereviews each year.Care andsupport• Only half of people with MS (53 per cent)who are really struggling financially have theirneed for social care met, compared to nineout of 10 (86 per cent) who are financiallyreally comfortable.• Half of those who pay for all their social carefaced increasing costs over the past year.• 71 per cent of people with MS get unpaidcare, support or assistance from a friendor family member and nine out of 10 needassistance from others.• Those with a carer are 11 per cent morelikely to need additional social care but arefour per cent less likely to receive it.• 45 per cent of people with MS who feeltheir carer needs a carers’ assessment wereoffered one; and for those who are reallystruggling financially this falls to just37 per cent.We are calling for personal and social careneeds to be met through the same entitlementto free services as applies to healthcare,irrespective of age.All four governments must provide adequatefunding for social care authorities so peoplewith MS can access the services they needand retain their financial security. The currentincome-based variations in access to socialcare are not acceptable.For governments to establish qualitystandards for social care similar to thoseused to drive up standards for healthcare.A key aspect of quality must be genuineshared decision making in care planning.Preventative support for those with lower levelneeds should be an entitlement, not a luxury.We also call for proper recognition of, andsupport for, informal, unpaid carers, whoprovide vital support for people with MS, yet aretaken for granted by too many care providersand by government. Carers’ assessments mustbe routinely and consistently provided andsupported by timely and responsive services.FinancialsecurityEmployment:• A quarter of people with MS who are ofworking age are employed, compared tothree quarters of the wider UK population.• Only 25 per cent of unemployed peoplewith MS who want support to find paidemployment are able to get it.• Access to support to find, and hold on to,paid employment varies considerably acrossthe UK. People in Scotland and Wales, whofeel they need it, receive notably less support.Benefits:• Eight out of 10 (82 per cent) of those whotook part in our research receive DisabilityLiving Allowance (DLA).• 78 per cent of people getting DLA have afriend or family member who provides unpaidcare, support or assistance.• Of those who receive DLA, 66 per cent needfrequent or constant assistance compared tojust 10 per cent of those not receiving DLA.Of people on DLA, 18 per cent are strugglingor really struggling financially. This is twicethe number (nine per cent) of those who don’tget DLA.• We expect 46,000 people with MS who areof working age to be reassessed for thePersonal Independence Payment (PIP).Many people with MS can – and want – to work,but we need to do much more to help peopleto stay in employment, with occupationaltherapists crucial to unlocking much of whatcan be done.For those who are unable to work, or need extrasupport to stay in work, financial security isdependant on the ability to access appropriatebenefits. Benefits are also vital for covering theadditional costs of being disabled, which in turnhelp people to remain independent.We therefore insist that assessments forbenefits such as ESA and PIP recognise theneeds of people with fluctuating conditionssuch as MS.Physical andmental wellbeing• There is a worrying inequality in accessto emotional support, physiotherapistsand continence advisors that correspondsdirectly to income. For example, only 33per cent of those who are really strugglingfinancially get sufficient emotional support,compared to 72 per cent of those who arereally comfortable.• 78 per cent of those who are usually oralways asked what is important to themby professionals who help manage theirMS had their need for emotional supportmet. In contrast only 30 per cent of thosenever asked had this need met.• Physiotherapists are essential for facilitatingsupport to remain physically active. Thosewith a physiotherapist are nearly twice aslikely to have their need to access supportto remain physically active met.• People who are able to see a specialist,particularly those who find it easy, feelbetter informed about their MS.Being empowered, involved in your careand well informed is key to physical andmental wellbeing. Our research reveals apostcode lottery of access to specialistsand a worrying inequality of access linkedto income; which is why we are calling forregular and timely access to all specialists.
10 A lottery of treatment and care – MS services across the UK A lottery of treatment and care – MS services across the UK 11The UK performs poorly against our neighboursand comparable developed countries. We areranked 25 out of 27 European countries on theproportion using disease modifying treatments;with only Poland and Romania doing worse.4The UK also lags behind other developedeconomies in adoption of innovative medicaltechnologies.5However, our research found, reassuringly, noclear evidence that personal finances play apart in whether someone is taking a DMT, unlikesome other elements of treatment and care.Access to the right treatment at the right time isa fundamental right.The MS Society believes that every person withMS must have equal access to treatment, andwe have fought hard to present a robust case forthese medicines to be made universally availableon the NHS.Why do so few peoplewith MS access DMTs?Our research shows a clear link between accessto information about medicines and accessto the medicines themselves. People who feelthey have received enough information aboutmedicines are 32 per cent more likely to betaking a DMT than those who did not receiveadequate information.Access to an MS specialist is also a major factor.Those who see an MS nurse or neurologist aremore than twice as likely to take DMTs.More work is needed to tease out theimplications of this information gap. It may bethat MS specialists give priority to people withMS who are on medication when allocatingappointments. Or perhaps seeing a healthcareprofessional makes it more likely that someonewith MS is prescribed a DMT in the first place.However, despite having enough information41 per cent do not take a DMT. This couldbe due to barriers to accessing medicines;because individuals make an informed decisionnot to take them; or because they don’t knowwhat information is out there that they couldhave access to, such as around new treatmentsor new evidence of efficacy.The experience in Northern Ireland, whichhas a much higher proportion of people withMS taking DMTs than the UK average (68 percent compared to 40 per cent) provides someimportant clues. Northern Ireland is the onlyplace in the UK where most people with MSare routinely invited every six months to seea neurologist or MS nurse for a review. Byensuring that people with MS are regularlyseen by a specialist, and do not slip out ofthe system, their treatment options are undercontinual and ongoing assessment. They arealso more likely to get the information theyneed, to discuss issues such as side effects, orhave other services signposted.Access toMS medicines60%of eligible peoplewith MS are nottaking DMTsEvidence in actionIn March 2012 we forced NICE tomake a U-turn on its decision to denyaccess to Gilenya on the NHS, thefirst-ever pill for MS. A key element ofour campaign was a survey of morethan 1,000 people with MS, whichspelt out the difference – in real terms,for real people – between taking a pilland having to inject yourself regularly.Following the ‘yes’ from NICE, theScottish Medicines Consortium (SMC)and Northern Ireland’s Departmentof Health, Social Services and PublicSafety (DHSSPSNI) also approvedthe use of Gilenya.Six out of 10 eligible1people withMS are not taking medicineswhich can alter the course ofthe condition. There is alsoconsiderable variation in accessto treatments between thefour nations.Disease modifying treatments (DMTs) werefirst licensed in the UK in 1995, but not madeavailable on the NHS until 2002. So, until 2002,people diagnosed were generally told theyhad MS and to go away and learn to live withit. They were typically just given painkillersand relapses were treated with steroids (whichhad severe side effects). From 1995 someconsultants helped the few who could afford itto buy treatments direct from pharmaceuticalcompanies.In 2002, following doubts about the costeffectiveness of the new treatments, theNational Institute for Health and ClinicalExcellence (NICE) asked the drug manufacturersand the Department of Health to find a way toenable access to the treatments across the UK.The landmark MS Risk Sharing Scheme wasthe result, making a group of four treatmentsavailable on the NHS, throughout the UK. Sincethen three more DMTs have been licensed.• Extavia was licensed in 2009 and, similarto those medicines under the risk sharingscheme, reduces relapses by a third.• In 2007 and 2012 respectively, Tysabri andGilenya were approved for use on the NHSacross the UK. Tysabri, a monthly infusionadministered by a healthcare professional,reduces the number of relapses by anestimated 67 per cent and slows disability.Gilenya, the first pill for MS, reduces relapserates by 54 to 60 per cent and slowsdisability2progression by around 30 per cent.3• Treatment options were further expandedwith the licensing of three important symptommanagement treatments (SMTs); Sativex inJune 2010 and Fampyra and Botox in 2012.But shockingly, despite clinical trialsconsistently showing these treatments reducerelapses (to varying degrees), slow progressionof the disease and help people with MS copewith symptoms, our research shows only 40 percent of eligible people with MS take one of theseven DMTs currently licensed and approved foruse in MS.Based on NICE estimates around 510 peoplewith relapsing remitting MS who took part inour research could benefit from Gilenya, butonly 25 people – five per cent of those eligiblefor the treatment – are actually taking it.Although it was approved for use on the NHSsix years ago, there is a similar gap betweeneligibility and access to Tysabri. We estimatethat around 689 people who took part in ourresearch should be on this treatment, but only203 people – 29 per cent of those who areeligible – are taking it.Access is a postcode lottery. The reality is thatif you have MS and live in Northern Ireland, youare twice as likely to be taking a DMT than if youlive in Wales. Access to treatment in Scotlandand England was almost as bad as Wales.Proportion of those eligible taking DMTs40%30%40%UK68%36%
12 A lottery of treatment and care – MS services across the UK A lottery of treatment and care – MS services across the UK 13Fightingfor newTreatmentsChris Ray, 53, lives inBromsgrove and wasdiagnosed with PrimaryProgressive MS threeyears ago. In December2012 she was prescribedFampyra, a licensedtreatment which improveswalking ability and speedin people with MS, but hasto pay £230 a month toget it.She says: “This treatmenthas given me my lifeback – it has made ahuge difference to mywalking, I’m much quickerand more efficient now,which means I’m not asfatigued. Before takingthe treatment I was on theverge of depression andwas thinking about givingup work; I just didn’t havethe energy – but that’s allchanged. I work 16 hours aweek and can’t afford thetreatment on my own soI’m fundraising to help payfor it; it’s unfair.”Grace Rodgers, 52, fromBelfast, was diagnosedwith relapsing remittingMS in 2007. Three yearsago her neurologistapplied for her to receiveSativex on the NHS, buther request was refused.She submitted moreevidence, but again herlocal Health Trust declinedto fund the treatment.She said: “I have spasmsand pain because ofmy MS. I just want thechance to try Sativex,but I’ve all but givenup on getting it now.It’s not fair that somepeople get access toMS treatments andothers don’t. It makesme so angry. I feel likegiving up because theend result is alwaysthe same, a postcodelottery that I never win.”Symptom managementThere is no doubt that symptom managementtreatments (SMTs) can make a huge differenceto people’s everyday lives, by helping controlproblems such as spasticity and walking, whichcan seriously impact quality of life.But access to Sativex – the UK’s first cannabis-based licensed medicine – and Fampyra –which can improve walking speed by 25 percent – is abysmally low. Only two per cent ofpeople with MS have access to theselife-changing treatments.Since our research, Botox has been licensedfor treatment for an overactive bladder, addingto the SMTs which should be available forpeople with MS.Inconsistency in decision-making at a localhealth authority level also impacts upon access.For example, in February 2011, the MidlandsTherapeutic Review and Advisory Committee(MTRAC) – an independent advisory group thatprovides guidance on pharmaceutical treatmentsto PCTs in the West Midlands – recommendedagainst prescribing Sativex. It claimed Sativex“cannot be recommended for prescribing becauseof inadequate evidence for efficacy and/or safety”.This decision is based on an inaccurate analysisof the data, and on the cost impact of thetreatment rather than cost effectiveness. Butdespite writing to them to point this out, and thefact that the decision contradicts the extensiveappraisal carried out by the Medicines andHealthcare Products Regulatory Agency (MHRA),the national regulatory body, the Committee hasnot reviewed its policy.The shockwaves of this decision have spreadway beyond the Midlands, and have triggereda proliferation of similar decisions from otherregional bodies. As a result, people with MS arebeing denied treatment or struggling to accessa treatment that has the potential to significantlyimprove their quality of life.Accessing SMTs, which can make the differencebetween working or relying on welfare, is oftena battle. People living with MS face a continualstruggle against the condition; they should nothave to struggle against the health system, too.Our hopeWith four new MS medicines on the horizon,it is more important than ever that every personin the UK who has MS is able to access the rightmedicines at the right time.We believe people with MS in the UK shouldbe among those having the best access tomedicines in Europe, not be counted amongthose with the worst. And if these new treatmentsare approved, access must be based on need,not a person’s address.Our call• Ensure every person with MS has apersonalised treatment, care and supportplan, with two comprehensive reviews eachyear. These reviews should be led by an MSspecialist who can ensure that treatmentoptions are reviewed on an ongoing basis;that individuals have access to informationto help them make informed choices; and sothey can be referred to the health and socialcare services required to meet their needs.These reviews should occur regardless ofwhether a person is on treatment and shouldbe in addition to other appointments madeat the point of need, for example, experienceof a relapse or a significant change insymptoms.• The reviews need the backing of systematic,integrated commissioning, so coordinated,multi-disciplinary care becomes a reality.• The Association of British Neurologists(ABN) should build on their establishedprofessional leadership and update the2009 prescribing guidelines for MS. Theseprescribing guidelines should be updatedafter the publication of any further guidance(by statutory regulators) on new treatments.• Local health authorities must avoid blanketbans on approved medicines and makerecommendations on a case-by-casebasis according to individual needs andcircumstances. In doing so they shouldrespect the decisions made by the (MHRA)and European Medicines Agency (EMA) onthe safety and efficacy of treatments.Our pledgeWe will:• Work with a number of partner organisationsto better define the pathway of treatment,care and support that every person withMS should expect to benefit from.• Empower people with MS to make informedchoices on their treatment by continuing toprovide up-to-date information and decision-making tools• Monitor prescribing rates for any evidence ofvariation in access and challenge treatmentpolicies where concerns are identified.• Speak directly to decision makers across thefour nations, with a strong, clear voice, toimprove access to effective MS treatments.MedicinemilestonesBefore 2002, steroids were the onlytreatment option through the NHS,though from 1995, when interferonwas licenced, some people boughttreatment privately.2002 – Launch of the MS Risk SharingScheme. Four DMTs – Avonex, Betaferon,Rebif and Copaxone – were provided onthe NHS across the UK, according to theABN prescribing guidelines.2007 – Tysabri approved by NICE forthe treatment of rapidly evolving severerelapsing remitting MS.2008 – NICE guideline for Tysabriendorsed in Northern Ireland byDepartment of Health, Social Servicesand Public Safety (DHSSPSNI).2009 – another DMT, Extavia, licensedfor MS2012 – Gilenya, the first pill for highlyactive relapsing remitting MS, approvedby NICE, recommended in Scotland bythe Scottish Medicines Consortium, andfunded in Northern Ireland by Departmentof Health, Social Services and PublicSafety (DHSSPSNI).2013 – NICE announced they willappraise four new MS treatments,three of which are pills, assumingthey are granted licences.Chris Ray Grace Rodgers
14 A lottery of treatment and care – MS services across the UK A lottery of treatment and care – MS services across the UK 15Care and supportThe dividing line betweenhealthcare and personal or socialcare has always been ratherarbitrary and has changed overtime, particularly with a long-term effort to care for peopleoutside the hospital setting.There is, therefore, no straightforward andconsistent way to define a person as needingnursing care or personal care or other support.In practice, people are defined subjectively andoften according to organisational pressures. Theinterests of the person being cared for can beuppermost in the minds of professionals or notreally relevant at all.Despite the arbitrariness of case-by-casedefinitions, our entitlement as citizens to thecare we need depends entirely on them. We aregenerally entitled to healthcare free according toour need and evidence-based medicine. Thereis no such entitlement to social care. This crucialdifference was set in stone way back in 1946,with the National Health Service Act stipulatingthat local authorities were free to charge forsocial care.Consequently, access to social care (in thebroadest sense of care and support) has beenrife with injustice and inequality for decades, butnever more than now.Devolution has enabled a more enlightenedapproach with regard to services for olderpeople in parts of the UK. New proposals for acare cap in England don’t get that far, but arealso limited to older people.6Marketisation, direct payments and personalbudgets have had a mixed impact, acting asa catalyst for personalised care in some areasand transforming care options for some people,but too often taking us further away from theprinciple of a public service entitlement basedon individual need.On balance, our evidence shows that accessto comprehensive care and support, for peoplewhose needs are driven by chronic disease, issimply inadequate.On top of the issue of equity of access,standards of social care that people doreceive (and the extent to which they are trulypersonalised) are highly variable, ranging fromexcellent, through neglectful, to criminally cruel.The added backdrop of massive cuts to publicspending place Cinderella services under evenmore pressure. There has never been a bettertime for all four governments of the UK to takeon the challenge of ensuring that care needs(those not defined as being healthcare) carry thesame entitlement to free services as those thatare defined as healthcare.Though the underlying faultlines go backgenerations, the current social care fundingcrisis is pressing and very real. There is anever-widening gap between the level of socialcare needed and funding allocated to provideit. This has a knock on effect on health thatposes real risks to people with MS. A surveycarried out by the Care & Support Alliancein 2011 found that a quarter (24 per cent) ofdisabled adults in England had already beenaffected by cuts to services – even thoughtheir needs were the same or had increased.7Shockingly, almost nine out of 10 (88 per cent)GPs warn their patients are at risk because ofinsufficient social care support.8This canonly get worse as cash-strapped councilscontinue to raise the bar for access to services.In 2011-12, 83 per cent of councils set thethreshold for eligibility for state-funded care at‘substantial’, compared to 78 per cent in theprevious year and 70 per cent in 2008/09.9Our research shows the system of care andsupport is already failing to meet the needsof people with MS and the people who carefor them.Across the UK, budget cuts are squeezing thefunds available for social care. At the same time,care costs are rising and an increasing numberof older and disabled people require care andsupport.If this ever-growing gulf between the need forcare and support and the funding to provideit is not addressed as a matter of urgency,services will reach crisis-point, with potentiallydevastating effects.Social care andpeople with MSSocial care provides people with MS practicalsupport to help them remain independent andlead a fuller life. This could include support witheveryday tasks like washing and dressing, orgetting out and about.Although the majority (60 per cent) of peoplewith MS say they did not need social caresupport in the past year, help provided byfamily and friends may mask demand for moreformal support. Seven out of 10 (71 per cent)receive unpaid care, support or assistancefrom a friend of family member. There may besome misunderstanding of social care support,who is eligible and how to access it. Despitethe fact that most did not believe they neededsocial care, nine out of 10 say they need at leastoccasional assistance from others.When looking at unpaid carers, two themesemerge. First, those who have a carer are 11 percent more likely to need social care but four percent less likely to have that need met. Secondly,three quarters (76 per cent) of people who didreceive social care support also had an unpaidcarer, suggesting the social care support aloneis not enough.This supports what we already know – peoplewith MS are supported by an army of unpaid,informal carers. We must ensure people canaccess social care and that those providinginformal, unpaid care are properly supported.Money mattersPersonal finances play an enormous partin people’s access to adequate social caresupport and our research reveals a stark divide.The people who are under the most financialstrain are also the most likely to report ashortfall in the social care support they need.Three out of four people worry about thefinancial burden of providing full-time care toa family member (76 per cent).10Half of those really struggling to makes endsmeet say they do not receive the social caresupport they need. By contrast, nine out of 10of people who are really financially comfortableget the social care they need.It is reassuring that over the past 12 months,most (63%) of those with MS who rely on thegovernment to pay for all their social care haveseen no change in the level of support theyreceive. However, 53 per cent of those who bearthe entire cost of social care themselves reporthaving to pay more over the same period.A similar picture emerges on access toequipment. Those most worried about theirfinancial situation are the least likely to haveaccess to a wheelchair, while those who arefinancially secure, are more likely to haveaccess to a wheelchair.Tim and MarionAnne, from Warwickshire provides 24-7care for her husband but asks: “Whocares for the carers? I went to thedoctors feeling unwell and was toldI had to be admitted to hospitalimmediately. When I asked, ‘whowill look after my husband’ thedoctor shrugged their shoulders andsaid ‘don’t know’. Our children donot live locally. My husband’s MS iscomplex and his needs are personalcare and nursing care. If I have togo into hospital again, I want toknow that he will be looked afterproperly.”Tim Sudbury, aged 67, was diagnosedwith MS around 25 years ago. Hiscondition has now progressed to astage where he cannot look after himselfunaided, and his wife Marion is hisfull time carer. The couple receives apersonal budget and 45 hours of careeach week, but this is not enough andthey’re struggling to cope with the cost.Marion said: “I worry about our future,how we’re going to manage andwhat’s going to happen. Tim needsa great deal of support, but I needsupport too and I feel my needs areoverlooked. The process of applyingfor more social care support, andappealing unfair decisions, isexhausting.”
16 A lottery of treatment and care – MS services across the UKLondonNearly three quarters of people with MS(71 per cent) have an unpaid carer. But ofthese, less than half (45 per cent) of thosewho needed one said that their carer hadbeen offered a carers’ assessment – andour research reveals deep local and financialdivides in provision of these important reviews.Our hopeLooking ahead to the next 60 years, we wantto see a world where every person with MSgets the social care they need, and provisiondoes not depend on ability to pay.Our callWe want governments across the UK to:• Establish an entitlement to free care andsupport to meet needs arising from medicalconditions, irrespective of age.• Provide adequate funding for social careauthorities to ensure people with MS reallycan access the services they need and retainfinancial security.• Establish quality standards for social caresimilar to those used to drive up standardsfor healthcare. A key aspect of quality mustbe genuine shared decision-making in careplanning.• Ensure seamless support and integratedhealth and social care services for everyperson with MS. Fundamental to this isthe inclusion of social care workers withinmulti-disciplinary teams.• Ensure that preventative support for peoplewith lower-level needs is built into the socialcare system.• Offer carers’ assessments on a routine andconsistent basis, regardless of whetherthe person with MS being cared for is inreceipt of social care services. Assessmentshould always consider the carers’ needsfor education and training as well as leisureand employment opportunities. Carers’support services, like other areas of socialcare, then need to be made real, with a clearentitlement and funded services, includingshort breaks. Such services help the caringrole to be sustainable and help carers to stayin work.• Ensure prevention is a priority, withresponsive and timely services for carersand people with MS to ensure situationsdo not spiral out of control.Our pledgeWe will:• Improve our information and tools neededto equip and empower people with MS tosecure the social care package which is rightfor them.• Work with local government organisationsto ensure services are responsive topeople’s needs.• Continue to invest in partnerships, suchas the Disability Law Service, to increaseaccess to legal services and advice forpeople with MS throughout the UK.• Champion the crucial role of families, friendsand work, in partnership with other carer-focused organisations, to increase supportservices.Support for carersWe must support informal carers on whompeople with MS rely. Having a carers’assessment, while providing no guaranteesof access to support and services, is a vitalstep towards achieving this.Each area represents a local authority.People whose carer wanted a carers’assessment and were offered one.13.0 – 19.019.1 – 25.025.1 – 28.228.3 – 52.252.3 – 82.0People whose carer wanteda carers’ assessment andwere offered one.Really comfortable57%Comfortable54%Neither comfortable or struggling43%Struggling34%Really struggling37%
18 A lottery of treatment and care – MS services across the UK A lottery of treatment and care – MS services across the UK 19Financial securityMany people with MS can – andwant – to work, but they facea series of social and physicalbarriers to getting and holdinga job. Shockingly, only aquarter of those who are not inemployment, but want to be, canaccess support to get a job.It is therefore not surprising that only one in fourpeople with MS who are of working age areemployed, compared to three out of four of thewider UK population.We also know that in two out of three cases,MS undermines employment and careeropportunities and, on average, a personwith the condition misses out on 18 yearsof working life.11Helping people to stay in work, and so find newemployment when they need to, is plainlybeneficial to people with MS, employers andwider society. Staying in work helps to maintainnormal life, engagement with others, a sense ofpurpose, being socially, mentally and physicallyactive. Employers benefit from retainingexperienced and valuable staff. Society benefitsin so many ways, but not least the reducedcosts that would be borne by the taxpayerresulting from people becoming unemployed.A supportive employer can makeall the difference to someone beingable to stay in work. East DurhamHomes – which looks after councilhousing – was nominated by employeeStuart Wood, who has MS, for theMS Society Awards in 2012. He saysimmense efforts have been made toenable him to continue doing his joband he’s had lots of support sincebeing diagnosed. This has meant he’sbeen able to carry on working full-time.Stuart says the company understandshow unpredictable MS can be and isvery flexible about letting him havetime off if he has a relapse or hospitalappointment. The firm has also helpedwith equipment and has suppliedStuart with an iPad since he found itdifficult to write by hand.“I am proud to work within acompany that doesn’t see a personhaving a disability as an obstacle.They understand how importantit is to me and my self esteem tokeep working.“This is a company that hasactively taken it upon itself to learnand understand what multiplesclerosis is.”Not in any form of employmentIn employmentAll working age75%25%18 – 3046%54%31 – 5058%42%51 – 6584%16%East Durham Homes fundraisingSupport to find or stayin employment need met.42%33%41%UK58%36%Our research reveals that only a third of peoplewith MS who feel they are struggling to makeends meet can access the support they needto stay in work, or find paid employment.Once again, there are wide national variations,with people in Scotland and Wales who needsupport to stay in or find work receiving far lesssupport than those in England and NorthernIreland. Note that this is a service where localvariation of access is very high. Also, NorthernIreland, again, outperforms the rest of the UK,indicating that these results are not merelythe product of differences in backgroundeconomic prosperity.BenefitsDespite a willingness to work, the grim realityis that four out of five people with MS becomeunemployed within 10 years of diagnosis.12For those who can’t work, or need extrasupport to stay in employment, access toappropriate benefits is essential to providefinancial security.Crucially, living with a disability often comeswith additional costs, which can range fromsimply getting out and about, to paying for helparound the house, informal care and preparedmeals, the cost of prescriptions (in England) orthe extra costs of heating, specialist equipmentand transport.Since the welfare state was established, shortlybefore the MS Society was founded in 1953,there has been a succession of schemesdesigned to support people with long-termconditions, illness and disability.In the 1970s there was Invalidity Benefit, the1980s saw the introduction of Income Supportand the 1990s gave birth to Disability LivingAllowance and Incapacity Benefit.Our research shows how the proportion ofpeople with MS in work decreases with age.Recent BenefitsChanges2008 – Employment and SupportAllowance (ESA) replaces IncapacityBenefit (IB) and sees the introductionof a new test: The Work CapabilityAssessment (WCA) for all newclaimants.November 2011 – More than 23,000people with MS who receive IncapacityBenefit still waiting to be reassessed.April 2012 – People with MS who areplaced in the Work Related ActivityGroup for ESA (requiring them toengage in some job-seeking activity)and those who receive contributoryESA have their benefits limited to12 months.From April 2013 – PersonalIndependence Payment, which formany will involve a face-to-faceassessment, begins to replaceDisability Living Allowance.Last year the Welfare Reform Act was passed,introducing what David Cameron describes as:“The most ambitious, fundamental andradical changes to the welfare systemsince it was created.”Stuart Wood
20 A lottery of treatment and care – MS services across the UK A lottery of treatment and care – MS services across the UK 21Financial securityunlocks servicesOur research reveals a clear link betweenfinancial security and care, and shows thatpeople with MS who are struggling financiallyare in general less likely to receive the care andsupport they need.For example, only 33 per cent of people who arereally struggling financially and need emotionalsupport are able to access it, compared to72 per cent of those who are really comfortable.A similar trend is seen in access to informationabout MS and whether people who wanted tocould see a physiotherapist.The most obvious explanation is that beingfinancially comfortable provides the means topay for care and support. But this has widerrepercussions on physical and mental wellbeing,as can be seen on page 22 where we examinethe impact of timely access to specialists.Another worrying pattern emerges from theresearch – those under the greatest financialpressure are the most in need of care andsupport. There may be a number of factorsat play:• The impact MS has on employment.• Increased day-to-day costs as a resultof MS, such as having to take taxis.• Having to pay for services such asphysiotherapy, wheelchairs or homeadaptations.• The level of care available to someone ona lower income.• There may also be a negative spiral, withinadequate care and services exacerbatingMS and therefore increasing the level ofassistance needed.Our hopeAnyone with MS who wants to work should getthe support they need to stay in employment.Accessing vital benefits should not be astruggle and welfare reform should not causestress for people with MS. Income must notdictate access to vital services.Our callWe want governments across the UK to:• Foster a better understanding of conditionssuch as MS among employers and supportemployees with MS to stay in work for aslong as possible. Flexible working hours,scheduled work breaks with a place torest, improved awareness of MS amongcolleagues and increased support fromemployers and colleagues may all assista person with MS to remain in work.• Protect investment in work-based supportprogrammes.• Ensure that multi-disciplinary health andsocial care teams include occupationaltherapists, who can do so much to helppeople with MS to stay active and helpemployers to make appropriate adjustments.• Promote greater awareness of Access toWork and ensure workplace programmeschallenge discrimination and meet the needsof people with MS.• Ensure no one with a chronic, steadilyworsening condition such as MS issubjected to unnecessary, stressful andcostly reassessments for financial support.• Ensure assessments for benefits such asESA and PIP recognise the needs of peoplewith fluctuating conditions such as MS.Our pledgeWe will:• Work to increase the number of localpartnerships providing welfare andbenefits advice.• Continue to provide up to date informationon changes to benefits, including a new‘MS Essential’ publication about PIP insummer 2013.• Work with the Disability Benefits Consortiumto monitor the transition to PIP, includingthe performance of the two main providers,ATOS and Capita.• Collaborate with the Work Foundationto explore how a pan-disability employersrating, which builds on the Positiveabout Disabled People Scheme, canbe established.Sanjay, who hasMS says: “My lastassessment leftme physically andpsychologicallydistressed andexhausted. There waslittle or no meaningfulunderstanding [of the impact]the length and content of such anassessment could have on my MS.“It left me feeling humiliated andguilty for requesting somethingthat I am supposedly entitled to.Surely we’re better than this.’’Kay-Anne, from Southend-on-Sea, says:“Disability Living Allowance meansindependence and security. I havea blue badge and a motability carthrough the mobility part of DLA.My car is my independence. Itallowed me to continue workingfor as long as I did because I hada way of getting there. It lets mesocialise with friends and family.No car equals no independence.No independence means not beingable to get out, which means Ibecome isolated, which means myMS gets worse because I am lessactive. It means my mood dropsand I become depressedand suicidal.“The thought of losing mybenefits and especiallymy car is terrifyingand potentially lifethreatening becauseof the effect it wouldhave on my well-being and mood.”As MS is a chronic, long-term condition, withmost people getting steadily worse, these face-to-face assessments are often unnecessary.82 per cent of people who completed ourresearch are on DLA, and, of these, 82 percent are receiving both the care and mobilitycomponents. We expect around 46,000 workingage people with MS to be reassessed for PIP.Of people who receive DLA, 66 per cent needfrequent or constant assistance from others –six times the number who do not receive DLA(10 per cent).Those who receive DLA are two times morelikely to be struggling, or really struggling,financially – 18 per cent compared to nine percent of those not in receipt of DLA.This reveals a worrying interplay betweenincome and need, with those who are morefinancially vulnerable, and have the greatestneed for assistance, being the most reliant onDLA. Any loss or reduction in this support couldbe devastating.There is also widespread concern that thedebate surrounding these welfare reforms hasresulted in a proliferation of myth, stereotypeand prejudice towards those claiming benefitsthat are essential to their wellbeing.But there is real concern that the UKGovernment’s decision to focus on “those withthe greatest need” risks leaving many peoplewith no help at all, including those with verygreat needs.The vast majority of councils already give socialcare support only to those with the most criticalneeds, so DLA – which covers the additionalcosts of living with a disability – is a vitalresource for the large numbers of people withMS who don’t qualify for social care support.These changes to the benefits system presentunique challenges for people with complex andunpredictable conditions such as MS.ESA and PIP, which replaces DLA from April2013, both involve face-to-face assessments.They are often poor at evaluating people withfluctuating conditions such as relapsing-remitting MS. They are also ill-suited torecognising the barriers created by less visiblesymptoms such as fatigue and pain.We know from our experience of the WorkCapability Assessment for ESA that people withMS often find these assessments extremelystressful, and there is clear evidence that stresscan exacerbate MS.12Kay-AnneSanjay
22 A lottery of treatment and care – MS services across the UK A lottery of treatment and care – MS services across the UK 23Physical andmental wellbeingA pound spent on preventionsaves many more by reducingthe cost of avoidable crisis care.13 14There is also good evidencethat being empowered, wellinformed and involved in yourcare enhances physical andmental wellbeing. However, thisneeds to be supported by accessto a range of MS specialists whohave the authority to coordinatecare and treatment.We have come a long way from the days of“doctor knows best”, to one where patientinvolvement, shared decision-making andself-management should be commonplace.Changes within professional bodies and shiftsin government policy have led to improvedaccess to information and greater patientinvolvement in decision-making – which areessential for self-management to work.Shared decision-making brings other benefits.Research demonstrates that helping peopleto better care for themselves can lead to apositive impact on people’s clinical symptoms,improve physical and mental wellbeing andchange how services are used.15However, keyto managing MS is the ability to see the rightspecialists when needed.Self-referral schemes, which allow individualsto refer themselves directly to services withoutfirst seeing their GP, can help to achieve this.The ability of individuals to self-refer hasbeen hugely successful in reducing the timeto referral – particularly to physiotherapy,improving access to services and reducingcosts associated with GP appointments.However, the ability to self-refer is onlyavailable in some areas and for some services.There should be a shared approach so thatregardless of where people live they canaccess the services that they need whenthey need them.While it is reassuring that people with MS havegood access to MS specialist nurses andneurologists, and that there is little variationeither between nations or by financial security,access to a specialist is not always timely. Onein five people with MS rarely, or never, find iteasy to see a healthcare professional whenthey need to.The impact of this is costly in both human andfinancial terms. We know that timely access tospecialists reduces hospital admissions andour work to protect specialist posts hasidentified significant costs associated withavoidable emergency care and re-admissions.In local project work in Surrey, we found thatmore than £1 million was spent on emergencyadmissions for people with MS. The mostcommon causes – urinary tract infectionsand pneumonia – should not require hospitaltreatment if managed appropriately with timelyaccess to specialists.Similarly, elsewhere £96,000 was spenttreating urinary tract infections which couldhave been prevented through improved accessto continence advice or a specialist nurse tofast-track treatment.Figures from the National Audit Office, whichcover emergency admissions in England,reveal a 32 per cent increase in neurologycases in the five years between 2005 and 2010– almost twice the rise in admissions overall(17 per cent).16There is no reason to believe these examplesare not typical of the UK as a whole andclearly show the NHS could save millions ofpounds spent on avoidable care by ensuringthat people with MS are able to see the rightspecialists, at the right time.The human cost, to often frail and vulnerablepeople, is incalculable.Access to specialistsAbility to pay is a major factor in being able toaccess physiotherapists, continence advisorsand emotional support when needed.For example, need met for emotional support:The same trend is seen for physiotherapists.Only 63 per cent of people who are reallystruggling financially had their need met tosee a physiotherapist, in contrast to 76 percent of those who are really comfortable.A gloomy outlookAround half of all people with MS experiencedepression, and a similar number suffer fromanxiety.17But our research shows that only halfthe people with MS (51 per cent) who needmood or emotional support actually get it.Health professionals clearly play an importantrole in accessing these life-enhancing services.Eight out of 10 (78 per cent) of those who arealways or usually asked what is important tothem by professionals when helping to managetheir MS could access mood or emotionalsupport. But only four in 10 gain access tothis support if the question is less frequentlyput. Access to a more proactive healthcareprofessional, who encourages people with MSto be involved in decision-making, clearly has apositive impact.Mood and emotional support need metReally comfortable72%Comfortable61%Neither comfortable or struggling48%Struggling41%Really struggling33%
24 A lottery of treatment and care – MS services across the UK A lottery of treatment and care – MS services across the UK 25Continence adviceContinence problems are a source ofenormous stress and anxiety for people withMS. Accidents, or the fear of having one,impact on every aspect of everyday existenceand have a corrosive effect on quality of life.Trends for access to continence advisorsmirror those for mood and emotional supportand physiotherapists, and once againinformation opens the way. People who need,but don’t get, sufficient information about theirMS are 21 per cent less likely to have seen acontinence advisor when they needed to. Asimilar pattern emerges with attendance on aself-management course.This may also influence access to newtreatments. Last year, Botox was licensed foroveractive bladder and access to a continenceadvisor would ensure people are aware of thetreatment and how it may benefit them.Knowledge empowerspatientsNine out of 10 people with MS who alwaysfind it easy to access healthcare professionalsalso report receiving sufficient informationabout their condition, compared to only fourin 10 of those who never find it easy to seea professional. However, there is an elementof chicken-and-egg: Do specialists provide,or signpost, this information? Or are thosewho are better informed more likely to accessa specialist?Fay Lovell is 39 and lives in the West Midlandswith her husband and their two daughters.Fay was diagnosed with relapsing remittingMS in 2000, but has rarely seen an MS nurseor neurologist since then and, as such, hasnever taken disease modifying treatments forher condition.She said: “I do feel I have been overlookedby the medical profession. When I wasdiagnosed I was sent away with littleinformation, and I thought I just had to geton with it. I saw my GP when symptomsgot really bad, but I never knew there wasan MS nurse or other services out thereto help me. I only realised what I wasmissing when I started going online andmeeting others with the condition.”Having the opportunity to attend a self-management course is also linked to feelinginformed about MS; 85 per cent of thosewho had the opportunity to attend a coursegot all the information they need about MS,in contrast to only 63 per cent of those whodid not. Similarly, while courses provideinformation about MS, people who are moreinformed about their MS may also be moreaware of the existence of these courses.Active measuresAt one time people with MS were advised toavoid exercise because of increased fatigueand heat sensitivity, which can worsensymptoms in the short-term.But the balance of evidence has moved onand exercise is now recognised as importantin helping people with MS to stay active.The evidence shows that exercise not onlyimproves overall health, but also helps withmobility and muscle weakness, managingfatigue and generally staying physically andmentally well.Physiotherapists play a vital role in enablingpeople with MS to remain physically active.Those with a physiotherapist are nearly twiceas likely to have their need for support toremain physically active met, such as attendingexercise classes (61 per cent vs 31 per cent).Those who need more assistance fromothers are less likely to be able to see aphysiotherapist if they need to. However, overhalf of those who need round-the-clock helpwant support to remain physically active. Webelieve there is a common misconception thatpeople who need constant assistance do notneed exercise classes. This clearly needs tobe corrected.The link between income and access to aphysiotherapist suggests that being morefinancially secure ensures better accessbecause it provides the means to pay privatelyfor physiotherapy.Northern Ireland out-performs the rest ofthe UK in providing support for people tostay physically active. In Northern Ireland,57 per cent of people with MS say theirneeds met compared to 47 per cent in theUK as a whole.In 2011, the MS Society launched a series ofMS exercise classes in conjunction with ActiveCommunities and Sport NI. The classes aredesigned to improve strength, mobility andbalance with functional exercises. In 2012 wehad over 1,600 attendances at 225 classes.We hope that such classes will now receivestatutory support throughout Northern Ireland.Exercising with MSLinda Erskin, who has MS, said:“The MS Society exercise classeshave really helped me to getactive and improve my strengthand balance. Before the classstarted I found it difficult to goto the local gym, as most ofthe classes were too difficult tomanage, but our class is tailored tothe needs of people with MS.It helps me to stay active, managemy MS symptoms and improve mygeneral health.”Linda ErskinJames West, aged 37, from Birminghamwas diagnosed with MS in 2001.In 2010 he began receiving Botoxinjections in his bladder wall to helpwith continence problems, and hasbeen receiving the treatment ever since.James said: “I’ve always had areally good relationship with myMS nurse, neurologist and otherhealth professionals. I see themwhen I need to; their help hasbeen invaluable in the day to daymanagement of the condition,especially with more distressingsymptoms – like bladdermanagement.”James West
26 A lottery of treatment and care – MS services across the UK A lottery of treatment and care – MS services across the UK 2713.0 – 19.019.1 – 25.025.1 – 28.228.3 – 52.252.3 – 82.0Percentage offered aself-management course.Spend to saveAusterity and cuts are having an impact onall levels of government, but these findingssuggest that targeted spending and patientinvolvement are not only cost-effective, butcould save the NHS millions of pounds inunnecessary hospital admissions.Our research suggests that those who aremore actively involved in their healthcare(ideally working with professionals to plan care)are more likely to access services. Improvingaccess to these specialists could preventunnecessary hospital admissions.Our hopeWe believe that people with MS should beempowered, involved in their care and wellinformed. This is key to their physical andmental wellbeing. We want to see an end to thepostcode lottery of access to specialists andthe worrying inequality of access linkedto income.Our callWe want governments across the UK to:• Incentivise NHS organisations/providersto offer a local self-referral service that willensure people with MS have timely accessto any member of the multi-disciplinaryteam, including MS specialists, at the pointof need and enable them to self-managetheir condition.• Ensure MS specialists are involved inthe planning of all health and social careservices for MS.Our pledgeWe will:• Work to improve understanding ofMS among all health and social careprofessionals.• Embed a culture of “no decision about mewithout me” in our information and supportvolunteer programme so that health andsocial care professionals are prompted bypeople with MS to understand what mattersthe most to them when managing their MS.• Ensure our fatigue management andcognitive behavioural training courses arerolled out across the UK to enable healthand social care professionals to bettersupport people with MS to manage fatigueand tackle feelings of low mood.• Provide information for people with MS toboost understanding of the value of exercise.• Work in partnership with health and socialcare professionals to support people withMS to remain active.• Continue to promote and protect the role ofMS specialists at a national and local level.In Scotland, people with MS have muchbetter access to self-management coursesand their experience provides a blueprint forimproving access elsewhere. The ScotlandSelf-Management Fund was launched in 2009,providing financial support for voluntary andcommunity health organisations and groups todeliver sustainable and innovative approachesto self-management. MS Society Scotland is akey provider of self-management courses, with141 people attending courses in 2012 alone.Map shows health boards in Wales and Scotland,health trusts in Northern Ireland and strategic healthauthorities in England.
28 A lottery of treatment and care – MS services across the UK A lottery of treatment and care – MS services across the UK 29Next stepsOver the past 60 years, newtreatments have emergedthat not only help treat thedebilitating and often hiddensymptoms of MS, but also modifythe course of the condition.These therapies can be transformative forpeople living with the anxiety and uncertaintyof an unpredictable, fluctuating condition suchMS. Given the life-changing potential of thesemedicines, it is shameful that access is soabysmally low across most of the UK.It is deeply depressing to see how so fewpeople with MS who are eligible for disease-modifying and symptom relief treatmentsbenefit from these therapies. Living with MS isa battle without having to fight for the effectivelicensed treatment options which, by law,should be made available on the NHS.However, access to medicines alone will notenable people with MS to enjoy full and activelives; excellent access to a broad range ofhealth services and care and support servicesis also vital. Yet in these areas our researchreveals shocking inequality.Those who are struggling the most financiallyare the least likely to be able to access a rangeof support services, despite being the mostlikely to need this help. This is seen in accessto physiotherapy, mood and emotional supportand social care and support.And while people with MS report havingaccess to a range of MS specialists, it isn’talways easy for people to see them. This hasserious implications because we know thattimely access to the right care and supportcan prevent hospital admissions and deliversignificant savings to the NHS. These healthinequalities are unacceptable; people with MSshould be able to access the right care, whenthey need it – regardless of income.Our findings must be seen against thebackdrop of a care and support system whichfails both those with MS and the people whocare for them; the challenging economicclimate and the well-founded fears peoplewith MS have about losing their benefits asa result of assessments that do not properlyrecognise the hidden and fluctuating nature ofthe condition.The MS Society has been working hard totackle many of these issues. We will continueto do that and always look for ways that wecan make the most impact for people. Nowis the time though for all tiers of government,across the UK, to step up to the mark andmake lasting and positive change. They must:• Ensure every person with MS has apersonalised treatment, care and supportplan, with at least two comprehensivereviews each year. These multi-disciplinaryreviews should be led by an MS specialistwho can ensure treatment options arereviewed on an ongoing basis; thatindividuals have access to information tohelp them make informed choices; and sothey can be referred to relevant health andsocial care services that meet their needs.These reviews should occur regardless ofwhether a person is on treatment and shouldbe in addition to other appointments madeat the point of need, for example, experienceof a relapse or a significant change insymptoms.• The care and support available must beseamless and responsive; integrating health,care and support services, with a commonapproach to quality and shared decision-making. Access must be based on needrather than ability to pay.• Ensure assessments for benefits such asESA and PIP recognise the needs of peoplewith fluctuating conditions such as MS.This should take into account the chronic,steadily worsening nature of the conditionand people with MS should not be forced tosubmit to unnecessarily stressful and costlyreassessments.• Ensure carers are routinely and consistentlyprovided with a comprehensive carers’assessment, regardless of whether or notthe person they care for receives socialcare services. They should be supported byservices which are provided in a timely andresponsive manner.Implementation of these four corerecommendations will vastly improve quality oflife for people living with MS and their carersby ensuring:• People with MS have regular and timelyaccess to a range of MS specialiststhroughout their lives, providing specialistinput, information and referral to relevantservices when it is needed most. Thiswould help ensure people with MS are fullyinformed and empowered to discuss a rangeof issues that may be of concern, includingnew symptoms, how these can be managed,and treatment options.• Care and support is available at the righttime to enable people with MS to live asindependently as possible.• People with MS are supported to managethe extra costs of living with a disability andare able to receive the benefits to which theyare entitled, whether they are in employmentor not.• Friends and family members who care fora person with MS feel supported. Pendinga carers’ assessment, they will be ableto access local services to ensure theirdecision to care for someone does notcompromise their own health and wellbeingand ability to enjoy a full and active life.Government commitment to theserecommendations will help make the differencebetween MS being a condition that destroyslives and supporting people with MS to enjoythe full and rich lives to which they are entitled.It is our sincere hope that advances in medicalscience, comprehensive care packages,a more sophisticated benefits system andgreater understanding from employers willenable the majority of people affected by MS –and their carers – to enjoy full and active lives.Together we will beat MS. Thank you foryour support.“It is imperative that each of usvoice our concerns, because, whenall said and done, we are the oneswith MS and we know what weneed - the Campaigns Communityconnects people and allows themto become a strong, united voice tobegin tackling the common issueswe all face.” – Campaigns Communitymember, 2012Are you as impassioned about someof these findings as we are? Thenconsider how you might play a part inhelping to hold our governments acrossthe UK to account and join our largeonline community of campaigners atthe address below. Here you can stayupdated about our campaigns work,learn how government policies mightaffect people with MS and learn howyou can get involved in our campaignswork. Once here, you can also checkout our new range of campaignsguides, including a guide on how tocampaign for access to MS medicines,functional electrical stimulation and alocal campaigners’ toolkit.www.mssociety.org.uk/campaignscommunity
30 A lottery of treatment and care – MS services across the UK A lottery of treatment and care – MS services across the UK 31 1. Ensure every person with MS hasa personalised treatment, care andsupport plan, with two comprehensivereviews each year. These reviewsshould be led by an MS specialistwho can ensure that treatmentoptions are reviewed on an ongoingbasis; that individuals have accessto information to help them makeinformed choices; and so they canbe referred to the health and socialcare services required to meet theirneeds. These reviews should occurregardless of whether a person is ontreatment and should be in additionto other appointments made at thepoint of need, for example, experienceof a relapse or a significant change insymptoms. 2. The reviews need the backing ofsystematic, integrated commissioning,so that coordinated, multi-disciplinarycare becomes a reality. 3. The Association of British Neurologists(ABN) should build on their establishedprofessional leadership and update the2009 prescribing guidelines for MS.These prescribing guidelines shouldbe updated after the publication ofany further guidance (by statutoryregulators) on new treatments. 4. Local health authorities must avoidblanket bans on approved medicinesand make recommendations on acase-by-case basis according toindividual needs and circumstances. Inso doing they should respect thedecisions made by the MHRA andEMA on the safety and efficacy oftreatments. 5. Establish an entitlement to free careand support to meet needs arisingfrom medical conditions, irrespectiveof age. 6. Provide adequate funding for socialcare authorities to ensure people withMS really can access the servicesthey need and retain financial security. 7. Establish quality standards for socialcare similar to those used to driveup standards for healthcare. A keyaspect of quality must be genuineshared decision-making in careplanning. 8. Ensure seamless support andintegrated health and social careservices for every person with MS.Fundamental to this is the inclusionof social care workers within multi-disciplinary teams. 9. Ensure that preventative support forpeople with lower level needs is builtinto the social care system. 10. Offer carers’ assessments ona routine and consistent basis,regardless of whether the personwith MS being cared for is in receiptof social care services. Assessmentshould always consider the carers’needs for education and trainingas well as leisure and employmentopportunities. Carers’ supportservices, like other areas of socialcare, then need to be made real,with a clear entitlement and fundedservices, including short breaks.Such services help the caring roleto be sustainable and help carers tostay in work. 11. Ensure prevention is a priority, withresponsive and timely services forcarers and people with MS to ensuresituations do not spiral out of control.What must be doneOur call – we want governments acrossthe UK to:UKParliamentWelshAssemblyNorthernIrelandAssemblyScottishParliamentAccesstomedicinesFinancialsecurityCareandsupportPhysicalandmentalwellbeing 12. Foster a better understanding ofconditions such as MS amongemployers and support employeeswith MS to stay in work for as longas possible. Flexible working hours,scheduled work breaks with a placeto rest, improved awareness of MSamong colleagues and increasedsupport from employers andcolleagues may all assist a personwith MS to remain in work. 13. Protect investment in work-basedsupport programmes. 14. Ensure that multi-disciplinary healthand social care teams includeoccupational therapists, who can doso much to help people with MS tostay active and help employers tomake appropriate adjustments. 15. Promote greater awareness of Accessto Work and ensure workplaceprogrammes challenge discriminationand meet the needs of peoplewith MS. 16. Ensure no one with a chronic, steadilyworsening condition such as MS issubjected to unnecessary, stressfuland costly reassessments for financialsupport. 17. Ensure assessments for benefits suchas ESA and PIP recognise the needsof people with fluctuating conditionssuch as MS. 18. Incentivise NHS organisations/providers to offer a local self-referralservice that will ensure peoplewith MS have timely access to anymember of the multi-disciplinaryteam, including MS specialists, at thepoint of need and enable them to self-manage their condition. 19. Ensure MS specialists are involved inthe planning of all health and socialcare services for MS.
32 A lottery of treatment and care – MS services across the UK A lottery of treatment and care – MS services across the UK 33References1. As DMTs are used to treat relapsing remitting MS and secondary progressive MS in whichrelapses are the dominant clinical feature, the percentages were calculated from respondentswho had indicated they had a relapsing form of MS or were taking a DMT.2. MS Society http://www.mssociety.org.uk/what-is-ms/treatments-and-therapies/licensed-disease-modifying-drugs/tysabri (Accessed March 2013)3. MS Society http://www.mssociety.org.uk/what-is-ms/treatments-and-therapies/licensed-disease-modifying-drugs/gilenya (Accessed March 2013)4. Kobelt (2009) Access to innovative treatments in multiple sclerosis in Europe5. Department of Health - Innovation, Health and Wealth: accelerating adoption and diffusionin the NHS http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_134597.pdf (Accessed March 2013)6. Department of Health - Policy statement on care and support funding reform and legislativerequirements page 10 http://www.dh.gov.uk/health/files/2013/02/Policy-statement-on-funding-reform.pdf (Accessed March 2013)7. Care and Support Alliance (2011) Submission to the Dilnot Commission Call for Evidence8. British Red Cross (2012) Taking Stock9. Care Quality Commission (2011/2012) The state of health care and adult social carein England10. Carers UK http://www.carersuk.org/newsroom/item/2961-3-in-4-fear-cost-of-caring(Accessed February 2013)11. Simmons, R. D., Tribe, K. L. and McDonald, E. A. (2010) Living with multiple sclerosis:longitudinal changes in employment and the importance of symptom management Journal ofNeurology, 257, 926-93612. Mohr DC, Hart SL, Julian L, Cox D, Pelletier D. (2004) Association between stressful lifeevents and exacerbation in multiple sclerosis: a meta-analysis. BMJ 328(7442):73113. LSE – Research proves that prevention is cheaper than cure http://www2.lse.ac.uk/newsAndMedia/news/archives/2010/02/popps.aspx (Accessed March 2013)14. Frances Heywood and Lynn Turner (2007) Better outcomes, lower costs: implications forhealth and social care budgets of investment in housing adaptations, improvements andequipment: a review of the evidence. London, Office for Disability Issues15. The Health Foundation (May 2011) Evidence: helping people to help themselves.London, The Health Foundation16. National Audit Office (December 2011) Services for people with neurological conditions. UK,Stationary Office17. Jones et al. 2012. A Large-Scale Study of Anxiety and Depression in People with MultipleSclerosis: A Survey via the Web Portal of the UK MS Register. PLoS ONE
MS SocietyMS National Centre372 Edgware RoadLondon NW2 6NDTel: 0845 481 1577MS Society ScotlandRatho Park88 Glasgow RoadRatho StationNewbridge EH28 8PPTel: 0131 335 4050MS Society CymruTemple CourtCathedral RoadCardiff CF11 9HATel: 029 2078 6676MS SocietyNorthern IrelandThe Resource Centre34 Annadale AvenueBelfast BT7 3JJTel: 028 90 802 802Multiple Sclerosis Society. Registered charity numbers 1139257 / SC041990. Registered as a limited company in England and Wales 07451571Published April 2013The following organisations endorse our UK analysis and recommendations:The Royal College of Nursing, The Work Foundation, The Chartered Societyof Physiotherapists and The United Kingdom Multiple Sclerosis SpecialistNurse Association.With thanks to Biogen Idec, whose funding support has helped make thiswork possible. Biogen Idec had no role in topic selection, question setting,analysis or reporting.Lead author – Samantha Kennedy, Campaigns OfficerEditor – Jane Symons, Communications ConsultantPrincipal investigator – Ed Holloway, Head of Care and Services ResearchAnalysts – Holly Dorning, Research Officer and Gemma Luck, VolunteerAdditional contributors – too many to mention, but greatly appreciatedIf you require this publication in an alternative format please contact us.