Neu­ro­log­i­cal pa­tients fac­ing strug­gle to get care they need

Ex­clu­sive: Neil Drys­dale ex­am­ines new re­port which says peo­ple are suf­fer­ing need­lessly

The Press and Journal (Aberdeen and Aberdeenshire) - - NEWS SPECIAL -

There have been plenty of head­lines re­cently about well-known Scots be­ing af­flicted with se­vere neu­ro­log­i­cal con­di­tions.

The Labour Party ac­tivist and Bet­ter To­gether cam­paigner Gor­don Aik­man elicited cross-party sup­port for the re­silience he dis­played be­fore suc­cumb­ing to mo­tor neu­rone disease in Jan­uary at the age of 31.

More re­cently, a TV pro­gramme about Mo­ray woman, Lucy Lin­tott, who is fight­ing the disease at only 22, at­tracted global at­ten­tion, while Scot­land rugby star, Dod­die Weir, has been di­ag­nosed with MND and cre­ated a new foun­da­tion.

Yet, be­neath th­ese high-pro­file cases, there are more than 1,000 peo­ple across Scot­land who are bat­tling such con­di­tions as MND, mul­ti­ple scle­ro­sis, Hunt­ing­ton’s disease, stroke and ac­quired brain in­jury with­out ap­pro­pri­ate sup­port.

And a damn­ing new re­port from health and so­cial care char­ity Sue Ry­der has found they are hav­ing to deal with in­ad­e­quate lev­els of care in ev­ery part of the coun­try.

The or­gan­i­sa­tion’s study, “Rewrite the Fu­ture”, pub­lished to­day, has re­vealed that nine of Scot­land’s 14 health boards – in­clud­ing Grampian and High­lands – do not have a neu­ro­log­i­cal ser­vices plan. Nor do they in­tend to de­velop such ini­tia­tives with their lo­cal health and so­cial care part­ner­ships, which have been fully func­tional since 2016.

De­spite a push from the Scottish Gov­ern­ment to pro­vide more care in the com­mu­nity rather than hos­pi­tals, only five health boards and three of 32 lo­cal au­thor­i­ties pro­vide com­mu­nity ser­vice for peo­ple with neu­ro­log­i­cal con­di­tions.

With­out ac­cess to th­ese spe­cial­ist re­sources, Sue Ry­der has high­lighted that many peo­ple suf­fer need­lessly and are un­able to live their lives as fully as pos­si­ble, while hun­dreds of oth­ers end up in old peo­ple’s homes be­cause they have nowhere else to go.

Pamela MacKen­zie, di­rec­tor of neu­ro­log­i­cal ser­vices in Scot­land at Sue Ry­der, is among those call­ing for a more in­te­grated ap­proach be­tween lo­cal au­thor­i­ties and cen­tral gov­ern­ment and the pro­vi­sion of more spe­cial­ist care cen­tres, such as Dee View Court in Aberdeen, which pro­vides roundthe-clock care to 24 res­i­dents at its Kin­corth base.

Un­for­tu­nately, from Dr MacKen­zie’s per­spec­tive, it is the only such fa­cil­ity in Scot­land. And, as the pre­vi­ous fig­ures un­der­lined, de­mand mas­sively ex­ceeds sup­ply.

She said: “Neu­ro­log­i­cal con­di­tions can strike any­one, at any time, hav­ing a mas­sive im­pact on them and their fam­i­lies.

“As well as cop­ing with the fi­nan­cial and emo­tional bur­den, they also have to face a dif­fi­cult strug­gle to get the spe­cial­ist care they need whether in their own home or in res­i­den­tial care.

“Since our (ini­tial) re­port last year, the Scottish Gov­ern­ment has started to take ac­tion: it is now work­ing on a project to find out how many peo­ple in Scot­land have a neu­ro­log­i­cal con­di­tion, so that ser­vices can then be de­signed to meet their need, and the clin­i­cal stan­dards for neu­ro­log­i­cal care are be­ing rewrit­ten, so that care is im­proved.

“How­ever, at this stage, peo­ple with neu­ro­log­i­cal con­di­tions are not ben­e­fit­ing from in­te­grated health and so­cial care – there is very lit­tle mean­ing­ful, in­te­grated spe­cial­ist care and few plans to change this.

“To put that sit­u­a­tion right, the Scottish Gov­ern­ment needs to show lead­er­ship and put in place a strat­egy for all the health and so­cial care ser­vices that peo­ple with neu­ro­log­i­cal con­di­tions need.

“Oth­er­wise, they will con­tinue to feel writ­ten off and that sim­ply isn’t good enough.”

One of the key find­ings of the new re­port is that more peo­ple with se­vere neu­ro­log­i­cal con­di­tions are be­ing placed in older peo­ple’s homes in Aberdeen and Aberdeen­shire than any­where else in Scot­land.

The cur­rent num­ber for Aberdeen is 102, 22 of whom are un­der 65, while there are 89 in the Shire, 23 of whom have not reached re­tire­ment age. This com­pares with 53 in Ed­in­burgh, 25 in Dundee, 13 in Mo­ray, five in Shet­land and six in the Western Isles. There were no fig­ures pro­vided by High­land Coun­cil.

Yet, as Dr Don­ald MacAskill, the chief ex­ec­u­tive of Scottish Care, ex­plained, th­ese sta­tis­tics could be only the tip of the ice­berg, such is the lack of de­tailed in­ves­ti­ga­tion by lo­cal au­thor­i­ties into the prob­lem.

He said: “The re­search from Sue Ry­der high­lights that there are sim­ply too many in­di­vid­u­als who are liv­ing where they do not want to be and where, frankly, they should not be.

“There are few care homes which are geared up to the par­tic­u­lar, spe­cial­ist and chal­leng­ing care and sup­port re­quired by many of the in­di­vid­u­als with di­verse neu­ro­log­i­cal con­di­tions.

“Neu­ro­log­i­cal con­di­tions can strike any­one, at any time, hav­ing a mas­sive im­pact on them “

“Dee first be­came ill af­ter suf­fer­ing from headaches for a year and ended up hav­ing two brain tu­mours re­moved. She was paral­ysed and to­tally de­pen­dent on oth­ers”

“The con­tin­ued ex­pec­ta­tion that the care home sec­tor is cur­rently equipped and re­sourced for spe­cial­ist neu­ro­log­i­cal care does a dis­ser­vice, not only to the in­di­vid­u­als and fam­i­lies in­volved, but also, crit­i­cally, to the staff who work in care homes and other res­i­dents who live there.

“At its heart, this is an is­sue of hu­man rights, dig­nity and au­ton­omy. It is time for all stake­hold­ers to recog­nise the sys­tem is not work­ing.”

As one might an­tic­i­pate, there are some poignant sto­ries when one peers un­der the sur­face.

Just con­sider the words of Thomas McGreevy, whose wife Dee, 56 – a for­mer nurse – has a neu­ro­log­i­cal con­di­tion and has been in an older peo­ple’s care home for two years.

He said: “My wife’s life has been re­duced to a mere ex­is­tence. I have long given up ex­pect­ing any kind of mir­a­cle, but now Dee is in a room 24 hours a day star­ing at the four walls.

“Dee first be­came ill af­ter suf­fer­ing from headaches for a year and ended up hav­ing two brain tu­mours re­moved. She was paral­ysed and to­tally de­pen­dent on oth­ers for ev­ery­thing.

“I can’t help feel­ing the sys­tem my wife de­voted her life to has sadly let her down when she needs it most.

“The NHS is ab­so­lutely won­der­ful, but, ev­ery now and then, peo­ple fall through the cracks and they sim­ply don’t get the right care in the right place.”

Th­ese words il­lus­trate the prob­lems which Dee View Court has man­aged to erad­i­cate for a small num­ber of peo­ple.

But pa­tients with com­plex neu­ro­log­i­cal prob­lems and their fam­i­lies still face an up­hill strug­gle.

The Scottish Gov­ern­ment yes­ter­day re­it­er­ated its com­mit­ment to tack­ling the sit­u­a­tion.

A spokesman said: “We want to en­sure that peo­ple liv­ing with neu­ro­log­i­cal con­di­tions have ac­cess to the best pos­si­ble care and sup­port.

“We will con­sider the find­ings of this re­port care­fully as we plan neu­ro­log­i­cal care ser­vices for the fu­ture.

“Our leg­is­la­tion to in­te­grate health and so­cial care has pro­vided a plat­form for health boards and lo­cal au­thor­i­ties, along with third and in­de­pen­dent sec­tors, to work to­gether to plan for and de­liver ser­vices to en­sure peo­ple get the care most ap­pro­pri­ate to them.

“The first min­is­ter an­nounced in the Pro­gramme for Gov­ern­ment the ex­ten­sion of free per­sonal care to ev­ery­one un­der the age of 65 who re­quires it.”

AC­TIVIST: Bet­ter To­gether cam­paigner and MND suf­ferer Gor­don Aik­man died aged 31

GLOBAL AT­TEN­TION: Mo­ray woman, Lucy Lin­tott, is fight­ing MND at only 22

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