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Arksey, H (2005) Access to health care for carers. National Co-ordinating Centre for NHS
Service Delivery and Organisation Research and Development, London.
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Intervention Evaluations
Su p p le m e n t a r y Re p or t f or t h e
N a t ion a l Co- or d in a t in g Ce n t r e f or N H S Se r v ice
D e liv e r y a n d Or g a n isa t ion R & D ( N CCSD O)
D e ce m b e r 2 0 0 3
pr epar ed by
Hilary Arksey
Social Policy Research Unit ( SPRU) Th e Univer sit y of Yor k
Addr ess f or cor r espon den ce
Dr Hilary Arksey, Resear ch Fellow Social Policy Resear ch Unit Universit y of York,
Heslingt on York YO10 5DD
Cont ent s
Se ct ion 1 I n t r odu ct ion 3
Se ct ion 2 Pr im a r y ca r e in it ia t ive s 8
2.1 Hackney and Newham GP–Car er s Pr oj ect 8
2. 2 New hav en Car er s Pr oj ect 11
2. 3 Car er s Pr im ar y Car e Pr oj ect at Fair field Sur ger y , Bur w ash 13
2.4 Paignt on and Br ixham GP Car er s Pr oj ect 15
2.5 Cornw all Carer Suppor t Wor k er s Ser v ice 17
2. 6 Br ent Pr im ar y Car e Pr oj ect 20
Se ct ion 3 Guide line s a nd t oolk it s 2 3
3.1 Guidelines for Pr im ar y Healt h Car e Team s: Sout h Asian
Car er s’ Pr oj ect 23
3. 2 Tak ing Act ion t o Suppor t Car er s: A car er s im pact guide for
com m issioner s and m anager s 23
3.3 How Good is y our Ser v ice t o Car er s? A guide t o checking
qualit y st andar ds for local car er su ppor t ser v ices 24 3.4 ‘Seven and a Half Minut es is not Enough’: A good pr act ice
guide for car er s, suppor t w or k er s and GP pr act ices 24
3.5 I dent if y ing Car er s in Gener al Pr act ice 24
3.6 How t o Ensur e y our Ser v ice is Responsiv e t o t he
Needs of Car er s 25
3.7 ‘A guide for assessing car egiv er needs: det er m ining a
healt h hist or y dat abase f or f am ily car er s’ 25
3 . 8 Healt hcar e for Car er s 25
Se ct ion 4 H om e - b a se d h e a lt h ca r e p r oj e ct s 2 7
4. 1 Telephone car er gr oups 27
4.2 Com put erLink 28
4. 3 Telem at ics int er v ent ion: t he ACTI ON pr oj ect 30
4.4 Relaxat ion dist ance lear ning audio t ape 32
4.5 Telephone- linked car e 34
4. 6 Massage for pr im ar y car er s 36
4 . 7 Mobile Therapy Unit 37
Se ct ion 5 Ge ogr a ph ica l in form a t ion syst e m s ( GI S) soft w a r e 4 0
5.1 GI S soft w ar e 40
Se ct ion 6 Con clu sion 4 2
Re fe r e n ce s 4 3
Ap p e n d ice s
Appe ndix 1 Typology of st u dy de sign s 4 5
Section 1 I nt roduct ion
This docum ent supplem ent s t he m ain r epor t of t he findings of new r esear ch ex am ining bar r ier s t o car er s’ access t o healt h car e, and int er v ent ions t o im pr ove accessibilit y ( Ar ksey et al. , 2003) . The st udy inv olv ed a r ev iew of t he lit er at ure and a consult at ion w it h key st akeholder groups; full inform at ion about t he m et hods adopt ed ar e cont ained in Chapt er 2 of t he m ain r epor t . Chapt er 4 of t hat r epor t ex am ines t he effect iv eness of 14 int er v ent ions designed t o im pr ov e car er s’ access t o healt h car e. The w or k cont ained in t he pr esent docum ent com pr ises det ailed infor m at ion about t he int er v ent ions, m at er ial t hat w e w er e unable t o include in t he m ain r epor t because of space r est r ict ions.
Ta ble 1 .1 Cor e e va lu a t ion st u die s ( n = 9 )
I D num ber
Aut hor( s) I nt ervent ion and m ain aim s Re se a r ch de sign and st udy t ypology design code
3 3 Naish an d
Benaim ( 1995)
Hackney and New ham GP– Carers Proj ect
To im pr ov e su ppor t t o car er s
Mix ed m et h od s
B3
3 6 St ev en s ( 1 9 9 9 ) Paignt on and Brixham GP Carers Proj ect
To iden t if y an d su ppor t car er s; t o p r om ot e car er aw ar en ess
Mix ed m et h od s
B3
3 8 Morris ( 2 0 0 2 ) Brent Prim ary Care Proj ect
To p r ov id e car er s w it h on e-t o-o n e ad v ice, su p p or t an d t r ain in g ; t o d ev elop aw ar en ess of car er s’ issu es in GP pr act ices
Mix ed m et h od s
B3
3 9 Br ow n et al.
( 1 9 9 9 )
Telephone Carer Groups
To com p ar e t h e im p act of t elep h on e carer g r ou p s w it h t r ad it ion al car er g r ou p s
Qu an t it at iv e m et h od s
B2
4 0 * Gallien n e et al. *
( 1 9 9 3 )
Com put er Link
To p r ov id e su p p or t t o car er s of p eop le w it h Alzh eim er ’s d isease v ia
Com p u t er Lin k
Qu an t it at iv e m et h od s
B1
4 1 Mag n u sso n et al.
( 2002)
Telem at ic I nver v ent ions
To p r ov id e d ir ect su p p or t an d
in f or m at ion t o car er s an d car e r ecipien t s v ia com pu t er t ech n ology
Mix ed m et h od s
B3
4 3 Mah on ey ( 2 0 0 1 ) Telephone linked care
To h elp car er s of people w it h Alzh eim er ’s d isease w it h ad v ice an d access t o a su p p or t g r ou p v ia t h e t elep h on e
Qu an t it at iv e m et h od s
B1
4 5 Joh n ( 2 0 0 0 ) Mobile Therapy Unit
To r eliev e sy m pt om s of st r ess in car er s an d p eop le w it h d em en t ia
Qu an t it at iv e m et h od s
B2
4 6 Foley ( 2 0 0 2 ) Geographical I nform at ion Syst em s ( GI S)
To assess t h e p ot en t ial ap p lica bilit y of GI S sof t w ar e t h r ou g h a st u d y of car er s an d t h e p r ov ision of sh or t t er m b r eak s
Mix ed m et h od s
B3
[image:5.596.69.525.89.641.2]Table 1.2 show s t he fiv e int er m ediat e st udies, pr esent ing C- t y pe ev iden ce. These st udies addr ess t he cent r al issue of car er s’ access t o healt h c ar e t o a lesser ex t ent , and/ or t heir qualit y is less r obust t han t he cor e st udies.
Ta ble 1 .2 I n t e r m e dia t e e va lu a t ion st u die s ( n = 5 )
I D num ber
Aut hor( s) I nt ervent ion a nd a im Re se a r ch de sign and st udy t ypology design code
3 4 Lloy d ( 1 9 9 6 ) Newhaven Carers Proj ect
To p r om ot e an d p r ot ect t h e h ealt h of car er s
Qu alit at iv e m et h od s
C1
3 5 Tar r y ( 1998) Carers Prim ary Care Pr oj ect at Fair f ield
Su r ger y , Bu r w ash
To iden t if y an d assist car er s
Qu alit at iv e m et h od s
C1
3 7 Mor r is
( 2 0 0 0 )
Cornwall Carer Support Workers Service
To im pr ov e su ppor t f or car er s of f er ed by pr im ar y h ealt h car e pr act it ion er s
Qu an t it at iv e m et h od s
C1
4 2 Lazar u s
( 1 9 9 8 )
Relaxat ion dist ance learning audiot ape
To r edu ce car er s’ st r ess lev els
Qu an t it at iv e m et h od s
C1
4 4 MacDon ald
( 1 9 9 8 )
Massage for prim ary carers
To r ed u ce car er s’ st r ess an d f at ig u e
Qu an t it at iv e m et h od s
C1
For t he pur poses of t he pr esent r epor t , w e ident ify indiv idual ev idence cat egor ies in t he heading for each int er v ent ion discussed below in or der t o in dicat e t h e st r en gt h of ev iden ce. We also m ak e passing r efer ence t o a num ber of guidelines and t oolkit s t hat have been published r ecent ly, som e of w hich hav e a st r onger ev idence base t han ot her s, but again w e ident ify t his on an individual basis. A sum m ary t able giving m ore det ails about all t he st udies included in each of t he t hr ee gr oups can be found in Appendix 2
For t he conv enience of r eader s, it is w or t h ex plaining t hat t he m ain r epor t used as it s or ganising pr inciple a t y pology of bar r ier s t o access t o healt h car e specif ically f aced by car er s. The t y pology cont ained fiv e differ ent t y pes of barriers relat ing t o:
• pr ofessional char act er ist ics;
• ser v ice issues;
• language or cult ural issues;
• car er or car e r ecipient char act er ist ics;
• inform at ion and knowledge issues.
[image:6.596.68.539.158.437.2]Box 1 .1 Typology of ba r r ie r s t o a cce ss t o h e a lt h ca r e for ca r e r s
Pr ofe ssion a l ch a r a ct e r ist ics
pr ofessionals’ per sonal char act er ist ics; pr ofessional aw ar eness of car er s; pr ofessionals’ appr oach and at t it udes t ow ar ds car er s.
Se r v ice issu e s
appoint m ent syst em s; w ait ing list s, adm ission crit eria; follow - up; st affing; agency policies and pr act ices; eligibilit y cr it eria; ident ificat ion sy st em s for r ecor ding pat ient s w ho ar e car er s; cost s/ char ges; pr ox im it y ; t r anspor t ; phy sical env ir onm ent of ser v ice prem ises; parking facilit ies.
La n gu a ge or cu lt u r a l issu e s: la n gu a ge diffe r e n ce s
cult ur al beliefs and pr efer ences; appr opr iat eness of ser v ices in t er m s of cult ur al, religious and language needs; racial prej udice and discrim inat ion.
Ca r e r or ca r e r e cipie n t ch a r a ct e r ist ic
help- seek ing behav iour ; indiv idual pr efer ences; per cept ions of qualit y of car e;
per cept ions of need; financ ial resources; anxiet y; previous experience; com m unit y and fam ily suppor t ; per ceived availabilit y of ser vices; w illingness and int er est in obt aining ser v ices.
I nfor m a t ion a nd k now le dge issue s
infor m at ion about , and know ledge of, available ser vices and pr oc edures; m edical confident ialit y issues.
The appr oach w e hav e t ak en in w r it ing up t his supplem ent ar y r epor t has been t o t r y t o answ er t he quest ion: how or w hy does t his int er v ent ion w or k , and for w hom ? I n ot her w or ds, r at her t han j ust discuss t he out com es of int er v ent ions w e inst ead r epor t on a r ange of fact or s, including t he cont ex t or pr ocesses t hat feed int o t he final out com es. We also indicat e w hich gr oups of car er s appear t o hav e t he m ost – or least – t o gain fr om t he differ ent t y pes of int er v ent ions, w here t his inform at ion was available in t he prim ary report . To t his end, w e discuss t he int er v ent ions indiv idually w it hin each of t he t hr ee gr oups and under t he st andar d headings, as follow s:
• Descr ipt ion of int er v ent ion
• Barriers addressed
• Evaluat ion
• Out com es
• St r engt hs of t he st r uct ur e, pr ocess and out com es of t he int er v ent ion
• Weak ness of t he st r uct ur e, pr ocess and out com es of t he int er v ent ion
• Key learning point s.
The r em inder of t he r epor t is or ganised as follow s. The nex t sect ion focuses on pr im ar y car e init iat iv es, w hich leads in Sect ion 3 int o a br ief ov er v iew of
Sect ion 2 Prim ary care init iat ives
2 .1 H a ck n e y a n d N e w h a m GP– Ca re r s Pr oj e ct
( I D num be r 3 3 ; e vide nce ca t e gor y B3 )
Descript ion of int ervent ion
The Hackney and Newham GP–Car er s Pr oj ect w as a dev elopm ent al pr oj ect t o w or k w it h GPs in t he t w o bor oughs bet w een Sept em ber 1992 and Januar y 1995. I t w as funded by t he King’s Fund Cent r e, and suppor t ed by t he Cit y & East London Fam ily Healt h Ser v ice Aut hor it y ( FHSA) . The ov er all aim s of t he pr oj ect w er e t o im pr ov e t he am ount and qualit y of suppor t car er s r eceiv ed t hr ough gener al pr act ice, and t o dev elop in pr act ice t er m s t he concept of ‘par t ner ship’ bet w een gener al pr act ice and car er s, pay ing par t icular at t ent ion t o achiev ing r ecognit ion of car er s’ ex per t ise and sk ills. The pr oj ect ’s super v isor w as a New ham GP and senior lect urer in t he Depart m ent of General Pract ice and Prim ary Car e at t he Medical College of St Bar t holom ew ’s and t he London Hospit als. Tw o par t - t im e pr oj ect developm ent w or ker s w er e appoint ed t o w or k w it h gener al pr act ices, one in Hackney and one in New ham . A st eer ing gr oup w as est ablished and m et t w o- m ont hly.
The pr oj ect com pr ised pr oj ect s- wit hin- t h e- pr oj ect . Fir st of all, pilot pr oj ect s w er e init iat ed in t w o GP pr act ices in Hack ney . One w as concer ned w it h an infor m at ion r esour ce, and t he second focused on pr act ice pr ocedur es t o ident ify and suppor t car er s. Final pr o j ect work in Hackney involved working in t hr ee pr act ices focusing on r espect iv ely : a healt h check sy st em for car er s of elder ly m ent ally ill pat ient s; a sur v ey of one pr act ice’s car er s about t he
ser v ices offer ed; t he r ole of r ecept ionist s as infor m at ion giv er s t o car er s. For a v ar iet y of r easons, no pilot pr oj ect s w er e est ablished in New ham . Final pr oj ect w ork in t hat borough com prised a series of six w orkshops w it h educat ional aim s. These w er e at t ended by pr act ice nur ses, pr act ice m anager s and
r ecept ion ist s fr om 13 pr act ices, as w ell as r epr esent at iv es fr om social ser v ices and car er s’ or ganisat ions. No specific pr oj ect w as init iat ed t ar get ing suppor t for carers from et hnic m inorit y com m unit ies.
Clearly, t he Hackney and Newham GP–Car er s Pr oj ect w as w ide r anging. I t is not possible w it hin t he const r aint s of t his r epor t t o discuss all aspect s of all t he indiv idual pr oj ect s. How ev er , one of t he Hack ney final pr oj ect s – t h e healt h check sy st em for car er s – w as par t icular ly r elevant and novel fr om t he point of v iew of t he pr esent r ev iew . The ‘Out com es’, ‘St r engt hs’ and
‘Weak nesses’ par agr aphs below concent r at e on issues r elat ed t o t hat specific pr oj ect . The ot her par agr aphs, how ev er , r elat e t o t he ov er all pr oj ect .
Ba r r ie r s a ddr e sse d
Pr ofessional char act er ist ics; serv ice issues; car er or car e r ecipient
m onit oring proact ive int ervent ions for carers t o im prove t heir phy sical and m ent al healt h; providing carer awareness t raining t o prim ary care t eam
m em bers; developing procedures t o ident ify carers; providing inform at ion about local ser v ices and how t o access t hem .
Evaluat ion
The ev aluat ion w as led by t he Depar t m ent of Gener al Pr act ice. Differ ent m et hods w er e adopt ed as appr opr iat e for t he differ ent pr oj ect s. These
involved finding out t he views of carers, GPs and ot her m em bers of t he prim ary car e t eam eit her t hr ough face- t o- face int er v iew s or quest ionnair e sur v ey s.
O ut com e s
The healt h check sy st em for car er s pr oj ect aim ed t o inv est igat e lev els of int er est of car er s of elder ly m ent ally ill people in a special ‘car er healt h check appoint m ent ’ at w hich t heir healt h, car ing sit uat ion and concer ns about t he per son t hey w er e car ing for could be addr essed. Som e 11 car er s m et t he pr oj ect w or k er , sev en of w hom t ook up t he opt ion of a special car er appoint m ent w it h t he GP. The appoint m ent com pr ised basic healt h check s ( check ing w eight , blood pr essur e, r ev iew of ow n gener al healt h) , and t hen an oppor t unit y t o discuss concer ns about t he car er ’s ow n healt h and t hat of t he per son car ed for . Analy sis of ev aluat ion quest ionnair es sent t o car er s show ed t hat t hey believ ed t he appoint m ent sy st em w as beneficial; in par t icular t hey w er e en cour aged by being r ecognised as car er s and felt r eassur ed by t he pr act ice’s com m it m ent t o m onit or t heir abilit y t o cont inue car ing. At t he
pr act ical lev el, r efer r als for com m unit y car e assessm ent s and r espit e car e w er e m ade im m ediat ely. The GP pract ice pilot ing t he ser v ices w as k een t o r et ain it ; t he lik elihood w as t hat it w ould be offer ed on an annual basis conduct ed one y ear by a GP and t he follow ing y ear by a pr act ice nur se.
St r e ngt hs of t he st r uct ur e , pr oce ss a nd out com e s of t he
int ervent ion
Th e pr act ice st aff felt t hat hav ing special appoint m ent s for car er s m eant t hey could m onit or sit uat ions t hat w er e oft en v ulner able and pr one t o br eak dow n. The int ent ion t o t r y t o r ev iew car er s in a ‘bat ch’ annually pot ent ially m eant t h at st aff’s effor t s w ou ld be focu sed on car er s over a shor t per iod of t im e. I n pr inciple, being m or e at t uned t o car er s ov er a shor t per iod w ould enable st aff t o deal m or e efficient ly w it h t heir indiv idual and gr oup needs. The pr act ice had a sy st em of t agging t hose pat ient s w ho w er e car er s on t heir com put erised not es, w hich w ould facilit at e ident ify ing ( new ) pat ient s w ho becam e car er s of elder ly m ent ally ill pat ient s and t hen adding t heir nam es t o t he list of t hose offered a special carer appoint m ent . I nform at ion derived from t he annual spec ial appoint m ent s could t hen be appropriat ely shared w it hin t he regular pr act ice clinical m eet ings so t hat r elev ant st aff ( such as dist r ict nur ses) w er e m ade aw ar e of t he car er ’s sit uat ion and could cont r ibut e t o t he car e
W e a k n e sse s of t he st r uct ur e , pr oce ss a nd out com e s of t he
int ervent ion
The innov at ion highlight ed t he need for good and efficient link s w it h social ser v ices, w hich t he pr act ice int ended t o for ge in t he fut ur e.
Key learning point s
( fr om a ll fiv e pr oj e ct s e st a blishe d u n de r t h e H a ck n e y a n d N e w h a m GP– Ca r e r s Pr oj e ct )
• Car er suppor t pr oj ect w or k needs t o be indiv idually t ailor ed t o t he specific pr act ice in quest ion, ack now ledging it s ow n par t icular cult ur e and
organisat ion.
• Th e assen t of t h e par t n er s of t h e pr act ice is im port ant , even if m uch of t he pr oj ect w or k w ill be done w it h adm inist r at ive or nur sing st aff.
• To achieve change, t hink about st ar t ing ‘sm all’ and aim for w hat is achiev able. The r ealit y is t hat it is not possible t o suggest m assiv e lar ge-scale ch an ges t o or ganisat ions t hat in pr act ical t er m s do not hav e t he capacit y t o engage in t hem .
• Pr act ices need effect iv e sy st em s for ident ify ing car er s, and a designat ed m em ber of st aff t o m aint ain t hem , in order t o support carers.
• Tim e t o set up new sy st em s and good pr act ice for car er s is difficult t o cr eat e in GP pr act ices funct ioning as ‘businesses’.
• Wher e car er s ar e not on t he sam e gener al pr act ice r egist er as t he per son t hey suppor t , com m unicat ion bet w een pr ofessionals becom es com plicat ed and cum bersom e, and issues of confident ialit y hav e t he pot ent ial t o cause real problem s.
• I t is im por t ant t o addr ess issues r elat ing t o t he sust ainabilit y of new syst em s and pr ocedur es if developm ent w or k init iat ed by pr oj ect w or ker s ov er a fix ed t im e scale is t o be cont inued. A r elat ed issue is t hat of k eeping infor m at ion pack s and local dir ect or ies of ser v ices up t o dat e.
• While spr eading good pr act ice is im por t ant and can be done t hr ough est ablished forum s, finding t im e t o release people for m eet ings can be difficult .
• Ther e ar e t r aining im plicat ions, not only for new st aff but also t o updat e ex ist ing st aff.
• Success is dependent on t he suppor t of a v ar iet y of local or ganisat ions, w ho can be inv olv ed t hr ough r epr esent at ion on a st eer ing gr oup.
2 .2 N e w h a v e n Ca r e r s Pr oj e ct
( I D num be r 3 4 ; e vide nce ca t e gor y C1 )
Descript ion of int ervent ion
The New hav en Car er s Pr oj ect w as designed as a pilot pr oj ect t o w or k , for one y ear , w it h pr im ar y car e t eam s t o pr om ot e and pr ot ect t he healt h of pat ient s w ho w ere carers. Funding of approxim at ely £10,000 from t he FHSA and East Sussex Healt h Aut hor it y w as used t o em ploy a par t - t im e ( 15 hours per week) car er s suppor t w or k er t o w or k in t wo GP pr act ices based in t he New hav en Healt h Cent r e ( and cer t ain Peacehav en pr act ices) fr om June 1995 t o May 1996.
Ba r r ie r s a ddr e sse d
Pr ofessional char act er ist ics; ser v ice issues; car er or car e r ecipient
char act er ist ics; infor m at ion and k now ledge issues. Specific obj ect iv es w it h t h e pot ent ial t o im pr ov e car er s’ access t o healt h car e included: pr ov iding car er awareness t raining t o all m em bers of t he prim ary care t eam ; creat ing pr ocedur es t o ident ify car er s; offer ing suppor t t o car er s t hr ough t he
developm ent of appropriat e prim ary care services; prom ot ing t he provision of local inform at ion.
Evaluat ion
An independent ev aluat ion of t he pr oj ect w as under t ak en by t he Univ er sit y of Sussex . The ev aluat ion w as based on int er v iew s w it h k ey st ak eholder s, and at t en d an ce at st eer ing com m it t ee m eet ings. I t w as concluded t hat t he New hav en Car er s Pr oj ect w as successful in achiev ing m ost of it s aim s.
How ev er , it w as not ed t hat w hile t he benefit s t o car er s can be assum ed, t hey cannot be accur at ely m easur ed. The r epor t ’s aut hor poin t ed ou t t h at t h e r eceipt of at t endance allow ance, j oining a suppor t gr oup or r eceiv ing
infor m at ion about t he lat est t echnology does not pr ov ide infor m at ion about t he ex t ent t o w hich t his has im pr ov ed t he car er ’s qualit y of life or pr ev ent ed t he on set of t heir ow n acut e illness.
Ou t com e s
Pr ocedur es w er e dev eloped w her eby car er s w er e ident ified and a logo
at t ached t o t heir paper not es; one pr act ice ident ified car er s on com put er ised not es. Ov er 200 car er s w er e ident ified, m ainly by t he pr act ice st aff. A v er y sm all num ber were ident ified by GP referrals, and slight ly m ore by self - referral. I dent ified car er s w er e t hen follow ed up by t he car er s suppor t w or k er t o ascer t ain w hat help m ight be giv en. An infor m at ion pack w as pr oduced,
det ailing suppor t ser v ices and facilit ies, t o be dist r ibut ed on r equest . A m ont hly car er s suppor t gr oup w as est ablished; a num ber of car er s r eceiv ed counselling and adv ocacy ser v ices ( oft en in r elat ion t o com plet ing claim for m s for
St r e ngt hs of t he st r uct ur e , pr oce ss a nd out com e s of t he
int ervent ion
Bot h GPs and pr act ice st aff agr eed t hat t he new pr ocedur es dev ised by t he pr oj ect did not seem t o hav e gr eat ly incr eased t heir w or k load. I n pr inciple, it w as feasible t hat t he pr act ice st aff and ot her pr ofessionals could m aint ain t hese pr ocedur es w it hout t oo m uch difficult y . Only t im e w ould t ell, how ev er , w het her r out ine car er ident ificat ion and suppor t w ould becom e a self
-sust aining pr ocess.
W e a k n e sse s of t h e st r u ct u r e , pr oce ss a n d ou t com e s of t h e
int ervent ion
There w er e consider able changes w it hin healt h, Social Ser v ices and FHSA or ganisat ions w hile t he pr oj ect w as t ak ing place, w hich led t o changes and lapses am ong m em bership of t he st eering com m it t ee. The lack of involvem ent by Social Ser v ices m ight hav e r esult ed in t he subsequent lack of input , t hr ough r efer r als for inst ance, by ot her Social Ser v ices st aff.
Som e event s t ook a long t im e t o organise, for exam ple t raining sessions for GPs and st aff w hich m ight hav e been seen as a necessar y pr elim inar y t o t he
pr oj ect w er e not held unt il eight m ont hs aft er t he pr oj ect began.
New hav en Healt h Cent r e w as ov er cr ow ded, and t he suppor t w or k er ’s r oom w as at t he back of t he building; t his locat ion r ender ed t he pr oj ect inv isible r at her t han v isible, and inhibit ed casual discussions w it h healt h pr ofessionals. A separ at e, dir ect t elephone line m eant t hat closer cont act by t he car er suppor t w or k er w it h ot her st aff w as lost .
I t w as difficult for t he car er s suppor t w or k er t o m ak e dem ands on ot her people’s t im e befor e it w as clear t hat t he r esult of t he end pr oduct w as w or t hw hile, but she needed t heir suppor t in or der t o est ablish t hese benefit s. Sev er al GPs gav e consider able suppor t t o t he pr oj ect , w hile ot her s seem ed t o ex pr ess lit t le concer n.
Key learning point s
• The car er support w orker should be provided w it h a highly visible office w it hin t he pr act ice pr em ises, com plet e w it h com put er and t elephone.
• I dent ificat ion of car er s is difficult , and ident ificat ion pr ocesses m ay r aise et hical and confident ialit y concer ns.
• All new pat ient s, and all ov er- 75s at t heir annual scr eening, should be asked about possible car ing r oles.
• Once ident ified, t he anony m it y and pr iv acy of car er s m ust be pr eser v ed; car er s m ust pr oact iv ely r equest help.
• Training in carer aw areness for GPs and ot her m em bers of prim ary care t eam s is cr it ical.
• I t m ight be useful for pr oj ect w or k er s t o v isit ot her sim ilar proj ect s t o learn fr om t heir ex per iences and r elat e t hem t o t he local sit uat ion.
• For a pr oj ect t o succeed, it m ust m aint ain a high pr ofile and w in t he act iv e suppor t of all.
2 .3 Ca r e r s Pr im a r y Ca r e Pr oj e ct a t Fa ir f ie ld
Su r ge r y , Bu r w a sh
( I D num be r 3 5 ; e vide nce ca t e gor y C1 )
Descript ion of int ervent ion
The pr oj ect br ief w as t o ident ify and t hen help in any w ay possible car er s on t he list of t w o GPs at t he Fair field Sur ger y in Bur w ash, East Sussex . The pr oj ect w as funded by t he Nat ional Lot t er y , and com prised 15 hours of a w or ker ’s t im e, w eekly, over a t w o- year period. I t began in July 1996. A room at t he surgery w as m ade available for t w o half - day s per w eek . The pr oj ect w as act iv ely suppor t ed by t he healt h aut hor it y w hich w as r epr esent ed on t he st eer ing gr oup t oget her w it h ot her st at ut or y and v olunt ar y agencies. A second pr oj ect on I nfor m at ion began at t he sam e t im e, under t he auspices of t he Sussex Rural Com m unit y Council. However, t his was discont inued aft er nine m ont hs.
Ba r r ie r s a ddr e sse d
Pr ofessional char act er ist ics; ser v ice issues; car er or car e r ecipient
char act er ist ics; infor m at ion and k now ledge issues. Specific obj ect iv es w it h t he pot ent ial t o im pr ov e car er s’ access t o healt h car e included: offer ing
infor m at ion t o car er s; r aising t he aw ar eness of t h e pr act ice st af f abou t car er s’ issues; est ablishing a carers’ support group in t he Burwash area; im proving t he healt h and financial w elfar e of car er s; im pr ov ing t he pr ov ision of local ser v ices.
Evaluat ion
The r epor t of t he pr oj ect w as w r it t en by t he pr oj ect w or k er . I t included a r ange of per for m ance or m anagem ent dat a t o analy se t he char act er ist ics of carers and individuals m aking t he referrals, t oget her wit h com m ent s from bot h car er s and GPs. How ev er , few det ails ar e giv en about how t hese lat t er dat a w er e collect ed. Alt hough t he ev idence base is w eak er t han w e w ould lik e, t he ev aluat ion does fill a gap in t he r ev iew in t hat it focuses on a pr im ar y car e init iat iv e locat ed in a r ur al set t ing.
Ou t com e s
r efer r als, t he pr oj ect w or k er put in few er hour s per w eek and t hose hour s t hen cont inued t o be used t o ex t end t he pr oj ect . At t he t im e of t he ev aluat ion, it was likely t hat a new worker would be appoint ed, wit h funding from t he Rural Developm ent Com m ission Rural Challenge fund, who would include carers from t he Bur w ash pr oj ect as par t of t heir r esponsibilit ies for a larger geographical cat ch m en t ar ea.
St r e ngt hs of t he st r uct ur e , pr oce ss a nd out com e s of t he
int ervent ion
A pat t er n of cont act w as dev ised t hat suit ed t he m aj or it y of car er s. Car er s w ere generally visit ed in t heir hom es, usually w it hin a w eek or so of t he init ial phone call m ak ing cont act . Agr eed act ion w as init iat ed, and check calls w er e m ade aft er six m ont hs. Ver y few people w ished t o t alk at t he sur ger y .
The dist r ict nur se w as par t icular ly helpful t o t he pr oj ect , and in addit ion t o m aking referrals helped t o r un t he suppor t gr oup.
The pr oj ect w or k er had no pr oblem s cont act ing st aff at t he sur ger y , and had g ood access t o t h e t w o d oct or s.
Ther e appear ed t o be no ex t r a w or k load placed on any pr act ice st aff.
W e a k ne sse s of t he st r uct ur e , pr oce ss a nd out com e s of t h e
int ervent ion
Som e t im e had t o be spent bot h init ially and over t he fir st few m ont hs dealing w it h t echnical m at t er s r elat ed t o t he com put er and dat abase soft w ar e. At t ending a t en- w eek cour se on w elfar e benefit s for one aft er noon a w eek also t ook t im e aw ay fr om dealing dir ect ly w it h car er s, but did help consider ably in t he subsequent w or k .
The num ber of car er s ident ified w as low ; no y oung car er s w er e found, and t he num ber s car ing for people w it h psychiat r ic diagnoses ( ot her t han dem ent ia) were sm all. It w as not possible t o set up any com pr ehensiv e m et hod of scr eening for car er s, as it w ould hav e put t oo m uch ex t r a w or k ont o ot her st aff for lit t le ‘ex pect ed’ r et ur n. The doct or s w er e not able t o agr ee on a sy st em t o t ag car er s’ not es and/ or com put er r ecords.
The m aj orit y of referrals cam e from one part icular doct or. While a referral let t er had been dev ised t oget her w it h t he doct or s, t his w as not br ought int o use, and referrals were m ade m uch m ore inform ally.
Ke y le a r ning points
• I t is im por t ant for t he pr oj ect and w or k er t o be accept able in t he sur ger y set t in g.
• A pr ofessional backgr ound helped est ablish t he w or ker in t he init ial st ages.
• The r out ine pr esence of t he w or k er in t he sur ger y facilit at ed pr act ice st af f ’s confidence in, and k now ledge of, t he pr oj ect .
• The int r oduct ion of t w o new pr oj ect s at t he sam e t im e w as not beneficial.
• I t is difficult t o ident ify car er s, especially y oung car er s and car er s of people wit h m ent al healt h problem s.
2 .4 Pa ig n t on a n d Br ix h a m GP Ca r e r s Pr oj e ct
( I D num be r 3 6 ; e vide nce ca t e gor y B3 )
Descript ion of int ervent ion
The Paignt on and Brixham GP Carers Proj ect began in April 1996 and ended in Sept em ber 1997. The idea or iginat ed in discussions bet w een social ser v ices and GPs ( one in par t icular ) ; t he idea w as t ur ned int o a r ealit y due t o t he availabilit y of m onies from Special Transit ionary Grant budget slippage. Sout h Devon Carers’ Consort ium t ook on t he m anagem ent and delivery of t he service. I n Phase 1, t w o car er s w or k er s w er e based in t hr ee pr act ices for half a w eek each ( t he pr oj ect did not pr oceed in a four t h pr act ice) . I n Phase 2, one w or k er cont inued in t w o pr act ices, and t he ot her had a ‘r ov ing’ br ief, w or k ing w it h a num ber of pr act ices but not based in any of t hem . The int ent ion in Phase 2 w as t o focus on m or e pr act ices in an influencing and educat ing r ole, r at her t han em phasising dir ect w or k w it h car er s. I n t his w ay , t he effect of t he pr oj ect w ould st ill be felt ev en aft er it had ceased t o oper at e.
Ba r r ie r s a ddr e sse d
Professio nal char act er ist ics; ser v ice issues; infor m at ion and k now ledge issues. The pr oj ect aim ed t o im pr ov e car er s’ access t o healt h car e by : ident ify ing car er s; dev eloping new w ay s of assessing t he needs of car er s; pr om ot ing and developing a range of appropriat e net w or k s and ser v ices t o m eet t he needs of car er s; pr om ot ing aw ar eness of car er needs w it hin t he pr im ar y healt h car e t eam ; signpost ing car er s t o ot her agencies and infor m at ion sour ces.
Evaluat ion
Ou t com e s
All t hr ee of t he pr act ices in Phase 1 had dev eloped ongoing suppor t sy st em s for car er s, as had one pr act ice in Phase 2. New car er suppor t gr oups w er e est ablished. All car er s’ r ecor ds w er e t agged, eit her w it h st ick er s for paper not es or on com put er r ecor ds. Ov er all, t he ev aluat or s j udged t hat t he pr oj ect had m ade a posit iv e cont r ibut ion t o t he w ell- being and em powerm ent of car er s.
St r e ngt hs of t he st r uct ur e , pr oce ss a nd out com e s of t he
int ervent ion
The inv olv em ent of t he Sout h & West Dev on Healt h Aut hor it y in Phase 2 w as believ ed t o hav e giv en t he pr oj ect ‘r espect abilit y ’ and opened door s t o t he roving worker in m ore pract ices.
The roving w orker w as able t o r each m or e pr act ices and ident ify m or e car er s, suggest ing t hat t his appr oach w as m or e cost - effect iv e. How ev er , t he w or k er s based in pract ices did m ore in- dept h suppor t of car er s, w hich m ight hav e had m or e im pact on t he w or k of healt h pr ofessionals in t h e pr act ices.
The obj ect iv e of building ( new ) suppor t sy st em s w it hin t he pr act ices w as t o ensur e t hat t he w or k for car er s could cont inue aft er t he end of t he pr oj ect . Ther e w er e gr ounds for opt im ism for t he sust ainabilit y of t hese ser v ices, part icula r ly in v iew of t he fact t hat t he Sout h Dev on Car er s’ Consor t ium , an infr ast r uct ur e body , w as ideally suit ed t o offer cont inuing suppor t and
infor m at ion. Hav ing said t hat , t her e w er e t ensions and conflict s. For inst ance, at least t h r ee pr act ices declin ed t o access funding for ser v ices for car er s w hich w ould last bey ond t he life of t he pr oj ect ev en t hough t he oppor t unit ies w er e t her e. This w as felt t o be link ed t o a lack of w holehear t ed suppor t by GPs in par t icular , and pr act ices in gener al.
W e a k ne sse s of t he st r uct ur e , pr oce ss a nd out com e s of t he
int ervent ion
I t w as felt t hat not enough t im e w as spent ex plor ing t he differ ent v alues and ex pect at ions of all t he st ak eholder s pr ior t o t he st ar t of t he pr oj ect . I nit ially , Social Ser v ices v iew ed t he pr oj ect as ex per im ent al. A r ev ised cont r act , w it h a shar per focus on ‘har d’ out put s and m or e defined act ivit ies, m oved aw ay fr om t his concept r esult ing in less flex ibilit y for r esponding t o dev elopm ent s as t hey ar ose and less oppor t unit y for longer- t erm educat ional w ork in t h e pr act ices. This had t he pot ent ial t o pr ej udice long- t er m beneficial effect s.
Ther e w as concer n about r aising car er s’ ex pect at ions, as t he pr oj ect funding w as shor t t er m and non- r ecur r ent , but , in t he v iew of Sout h Dev on Car er s’ Consort ium , it s aim s were long t erm .
Monit or ing ar r angem ent s fell dow n w hen t he Social Ser v ices init iat or of t he pr oj ect left her post shor t ly aft er t h e pr oj ect st ar t ed. Tar get s w er e n ot set and benchm ar k s not r ecor ded, m ak ing it difficult fr om t he st at ist ics r ecor ded t o det er m ine w hat im pact t he car er s w or k er s w er e hav ing com par ed t o w hat w as happening in t he pr act ices befor e t he pr oj ect st ar t ed.
The m edical m odel and t he hier ar chical or ganisat ions t hat m any GP pr act ices im plem ent m ay not easily fit w it h a pr oj ect designed t o explor e new w ays of m eet ing w hat am ount s t o non- m edical needs.
I n t he Paignt on and Brixham GP Carers Proj ect , it was hard t o obt ain GP com m it m ent and involvem ent . Consequent ly, t he car er s w or ker s t ended t o focus on act iv it ies w it h car er s r at her t han t r y ing t o affect t he ov er all cult ur e of t he pr act ice in quest ion.
Key learning point s
• The m ore self - sufficient a car er s w or k er c an be, t he easier it is for a GP pr act ice t o get inv olv ed in a car er suppor t pr oj ect .
• The pr ofessional st at us of t he car er s w or k er can be influent ial in t er m s of accept abilit y w it hin t he pr act ices in w hich t hey w or k ed. Ther e w er e indicat ions t hat a m edic al background was part icularly helpful.
• GP pr act ices need t o ex plicit ly sign up t o t he aim s, ex pect at ions and pr ocesses of car er suppor t pr oj ect s.
• Ther e should be clear and ex plicit agr eem ent s bet w een all t he
st ak eholder s in any pr oj ect , t o t r y t o deal w it h pot ent ial fut ur e difficult ies in adv ance.
• Tim e should be spent at t he out set of a pr oj ect on designing t he pr ocess and pr esent at ion of agr eed m onit or ing st at ist ics; t his w ould help clar ify how r ealist ic ex pect at ions ar e in t er m s of possible out put s and out com es.
• All senior GPs should be t horoughly involved in and com m it t ed t o t he pr oj ect in t he planning pr ocess.
• When init iat ing an innovat ion t hat m ight r equir e t he collabor at ion of pr im ar y healt h car e t eam s, t he sust ained input of t he local healt h aut hor it y ( or equiv alent ) m ay be necessar y fr om t he out set , t o assist in securing and m aint aining t heir cont inued com m it m ent .
2 .5 Cor n w a ll Ca r e r Su p p or t W or k e r s Se r v ice
( I D num be r 3 7 ; e vide nce ca t e gor y C1 )
Descript ion of int ervent ion
The Cor nw all Car ers Suppor t Wor ker s Pr oj ect w as set up in July 1996. Five GP pr act ices w er e pr ov ided w it h t he ser v ices of a par t - t im e carer support worker for a per iod of t w o y ear s. The Cor nw all and I sles of Scilly Healt h Aut hor it y funded t he fiv e w or k er s, and w as r esponsible for t heir t r aining. At t he count y level, t he Cornwall Rural Com m unit y Council ( CRCC) m anaged t he
st eer ing com m it t ee. Locally , t he ser v ice w as ov er seen and m onit or ed by a pr act ic e adv isor y com m it t ee for each of t he fiv e par t icipat ing GP pr act ices. At t h e en d of t h e t w o- y ear pilot per iod, t he car er suppor t w or k er s w er e
w it hdr aw n. They w er e r eplaced by ident ified ‘pr act ice car er s’ cont act s’ in four of t he GP pr act ices, w ho t ook on t he w or k pr eviously under t aken by t he car er support w orkers.
Ba r r ie r s a ddr e sse d
Pr ofessional char act er ist ics; ser v ice issues; car er or car e r ecipient
char act er ist ics; infor m at ion and know ledge issues. The or iginal pr oj ect aim ed t o im pr ov e car er s’ access t o healt h car e by, for exam ple: helping GP pr act ices and prim ary healt h care t eam s ident ify and support carers; im proving
accessibilit y t o infor m at ion, adv ice, counselling, suppor t and assessm ent for all car er s; encour aging car er s t o becom e act iv ely inv olv ed so t h at t h e pr oj ect ev olv ed as t hey w ant ed; ensur ing t hat GPs, pr im ar y healt h car e t eam s and social ser v ices w er e m or e k now ledgeable about car er s’ needs, and v iew ed t hem as par t ner s in t he car ing pr ocess.
Evaluat ion
Th e ser v ices pr ov ided by t h e pr act ice car er s’ cont act s w er e ev aluat ed in 2000 by an independent r esear cher . The aim of t he st udy w as t o inv est igat e t he ex t ent t o w hich sy st em s and pr ocedur es inst igat ed by t he four car er suppor t w or k er s had been m aint ained by t he pr act ice car er s’ cont act s som e 18 m ont hs aft er t he depar t ur e of t he or iginal w or k er s. Tw o quest ionnair es w er e designed t o collect infor m at ion fr om t he four pr act ice car er s’ cont act s, and a r andom sam ple of fiv e car er s fr om each pr act ice. We hav e not been able t o obt ain a copy of a r epor t produced in 1998 on t he original pilot proj ect .
Ou t com e s
Many car er s w er e able t o ident ify t he pr act ice car er s’ cont act at t heir sur ger y . They w ere provided w it h inform at ion and support , if not im m ediat ely t hen usually w it hin one w eek. Overall, t he result s suggest ed m ix ed success in t er m s of t he last ing im pact of t he car er suppor t w or k er ser v ice fir st im plem ent ed w it hin t he pr act ices. While t he r ole of t he car er suppor t w or k er had been clear ly ident ified, not all t hese funct ions w er e being m aint ained by t he pr act ice car er s’ cont act s. The pr ov ision of infor m at ion t o car er s, for ex am ple, w as t he only t ask under t ak en at all four pr act ices. All t he sy st em s r equir ed t o m aint ain a r egist er of car er s, t o ident ify and r ecor d pat ient s w ho w er e car er s, and t o m aint ain a r ecall sy st em for pat ient s w er e in place in one pr act ice only .
St r e ngt hs of t he st r uct ur e , pr oce ss a nd out com e s of t he
int ervent ion
The car er s int er v iew ed appr eciat ed t he ser v ices offer ed, and felt suppor t ed by t h eir pr act ice car er s’ con t act . How ev er , not all car er s k new w ho t heir
W e a k n e sse s of t h e st r u ct u r e , pr oce ss a n d ou t com e s of t h e
int ervent ion
Ther e w er e differ ences in t he r oles held by t he pr act ice car er s’ con t act s. On e w as a volunt eer w or king for a car er suppor t gr oup and not em ployed by t he pract ice; anot her w as a com m unit y nurse em ployed by t he Com m unit y Healt h Tr ust ; a t hir d w as a pr act ice r ecept ionist em ploy ed by t he pr act ice in
quest ion, and t he four t h w as t he dist r ict nur se em ploy ed by t he pr act ice. I t is possible t hat r easons w hy sy st em s w er e not being m aint ained w er e r elat ed t o t hese dist inct ions. Mor e of t he ident ified t ask s of t he car er suppor t w or k er were being perform ed in t he t wo surgeries w h er e t h e pr act ice car er s’ con t act w as act ually em ploy ed by t he pr act ice.
Tw o of t he car er s’ cont act s felt t hey did not hav e t he sk ills r equir ed for dealing w it h car er s ( for exam ple, counselling skills) , because t hey w er e not pr ofessionals. The fact t hat one w as a car er her self w as inhibit ing for som e of t he car er s, w ho felt t hey could not shar e t heir feelings as t hey per ceiv ed a lack of pr ofessional ex per t ise.
I n t he t w o pr act ices w her e t he car er s’ cont act s w er e also nur ses, car er s did not alw ay s differen t iat e bet w een t h e t w o r oles.
The pr act ice car er s’ cont act s did not hav e t im e t o follow up indiv idual car er s, w her eas t he or iginal car er suppor t w or k er had m ade a point of cont act ing all t he car er s.
Key learning point s
• Consider em ploying an individual w it hin each pr act ice, or shar ed bet w een sev er al pr act ices, dedicat ed specifically t o t he r ole of car er suppor t worker.
• Agr ee t he k ey elem ent s of t he r ole of t he car er suppor t w or k er and det er m ine w hat should be pr ovided on a r out ine basis by t he ident ified p r act ice car er s’ con t act .
• Det erm ine an appropriat e m onit oring procedure t o ident ify which elem ent s of t he r ole ar e effect iv e and w hich ar e ineffect iv e.
2 .6 Br e n t Pr im a r y Ca r e Pr oj e ct
( I D num be r 3 8 ; e vide nce ca t e gor y B3 )
Descript ion of int ervent ion
Br ent Car er s Cent r e has been w or k ing w it h GP pr act ice st aff since t he ear ly 1990s. Since 1999, t he Br ent Car er s Pr oj ect has been funded by Br ent Healt h Act ion Zone. Tw o pr oj ect w or k er s w er e em ploy ed acr oss Br ent ; t hey w er e phy sically based at t he Pr im ar y Car e Tr ust offices ( pr ev iously t he Pr im ar y Car e Group) . The workers were j oint ly m anaged by senior workers in t he Prim ary Car e Gr oup/ Tr ust ( PCG/ T) and t he chief officer fr om Br ent Car er s Cent r e. Som e 30 per cent of t he w or k er s’ t im e w as allocat ed t o w or k ing dir ect ly w it h car er s, and t he rem ainder t o developm ent w ork w it h prim ary care services.
Ba r r ie r s a ddr e sse d
Pr ofessional char act er ist ics; ser v ice is sues; car er or car e r ecipient
char act er ist ics; language or cult ur al issues; infor m at ion and k now ledge issues. The pr oj ect aim ed t o im pr ov e car er s’ access t o healt h car e by : ident ify ing car er s; pr ov iding car er s w it h infor m at ion, adv ice, pr act ical help and t raining; pr om ot ing aw ar eness of car er s’ needs w it hin t he pr im ar y healt h car e t eam ; forging links and developing net works wit h prim ary care m anagers and wit h GP pr act ice st aff t hr ough PCG/ T t r aining, dev elopm ent and st r at egy m eet ings.
Evaluat ion
Th e pr oj ect w as ev aluat ed in 2002 by t w o independent r esear cher s, w it h funding by Br ent Car er s Cent r e. The aim of t he ev aluat ion w as t o ex plor e w hat had w or ked w ell, w hat t he challenges w er e, and fut ur e developm ent s. Sem i -st r uct ur ed int er v iew s w er e under t ak en w it h a r ange of key -st akeholder s: car er s w ho had r eceiv ed suppor t fr om t he pr oj ect w or k er s; st aff at r andom ly select ed GP pr act ices; t he pr oj ect w or k er s; pr im ar y car e m anager s. Car er s also com plet ed t raining evaluat ion form s.
Ou t com e s
t hose w ho did not speak or r ead English as t heir fir st language, t he ex t ent t o w hich t his w as r ealised in pr act ice w as not m ade clear in t he r eport .
St r e ngt hs of t he st r uct ur e , pr oce ss a nd out com e s of t he
int ervent ion
The ev aluat ion ident ified a r ange of feat ur es t hat appear ed t o facilit at e GP suppor t for car er s. The pr oj ect w or k er s w er e phy sically locat ed w it hin PCG/ T, so w er e v isible t o bot h st r a t egic an d pr act ice- lev el st aff. This posit ioning allowed working relat ionships t o develop and provided an ongoing rem inder t hat car er s w er e an im por t ant issue.
While it w as t hought t o be unusual for t he v olunt ar y and st at ut or y sect or t o w or k so closely t oget her , t her e w er e adv ant ages t o j oint m anagem ent by prim ary care and Brent Carers Cent re: shared ‘ownership’ and responsibilit y for pr ogr ess and success; access t o ex per t ise w it hin, and infor m at ion about , bot h or ganisat ions; access t o m eet ings, st aff and t heir net w or k s in bot h agencies; t he w or k er s being v iew ed as cent r al PCG/ T st aff. Lik ew ise, j oint super v ision generat ed advice and personal support from senior m anagers in bot h
or ganisat ions.
The inclusion of form al m onit oring st andards for carers in t he GP Pr act ice Developm ent Plans in t he ( form er) Brent Nort h PCG area provided an im port ant incent iv e for pr act ices t o im plem ent car er sy st em s.
W e a k n e sse s of t h e st r u ct u r e , pr oce ss a n d ou t com e s of t h e
int ervent ion
All t he GP pr act ice st aff had high w or k loads, and t he full im plem ent at ion of sy st em s t o ident ify / suppor t car er s w as j ust one pr ior it y am ongst m any . Pr essur es on av ailable t im e, st aff and financial r esour ces m eant t hat not all pr act ices felt t hey could im plem ent car er sy st em s, and/ or did not place carers’ issues as high on t he agenda.
The t w o car er s w or k er s w er e cov er ing a t ot al of 74 GP pr act ices, as w ell as undert aking individual casework for 30 per cent of t heir t im e. Sim ilar proj ect s m ight em ploy workers whose rem it is t o support a sm aller num ber of surgeries but on a m ore int ensive basis.
Wor k er s found it could be difficult t o m anage t he casew or k and dev elopm ent w ork roles. Whilst casew ork w as valued, it w as t im e consum ing and som et im es view ed as a dist r act ion fr om developm ent w or k w it h GP pr act ic es.
Key learning point s
• Ask ing a quest ion about car er st at us on r epeat pr escr ipt ion for m s w as a par t icular ly useful m echanism t o ident ify car er s w ho w er e not r egist er ed at t he sam e sur ger y as t he per son t hey suppor t ed.
• Surgeries w it h at least one GP or pract ice m anager ‘on board’ w ere m ore lik ely t o allocat e t im e and r esour ces t o ident ify ing and suppor t ing car er s.
• Car er s w or k er s w er e m ost effect iv e w hen t hey built up close w or k ing r elat ionships w it h st r at egic and GP pr act ice w or k er s.
• GP pr act ices im plem ent ed unique set s of sy st em s for car er s t hat suit ed t heir part icular surgery’s size, st aff m ix and w or king cult ur e. Ther e w as no one ideal ‘bluepr int ’ t o suit all pr act ices.
• Having visible w or ker s in post , w it h t he specific r ole of pr om ot ing car er s’ n eeds, w as v er y effect iv e.
• GP pr act ice st aff w illing t o act as ‘cham pions’ and pr om ot e t he benefit s of im plem ent ing carer syst em s t o ot her surgeries should be ident ified and ut ilised.
• Prim ary care t rust m onit oring and incent ive schem es should be exploit ed t o prom ot e carer aw areness and t he im plem ent at ion of syst em s. Carer
m onit oring st andar ds should be est ablished, and car er- r elat ed agr eem ent s built int o new GP cont r act s.
Sect ion 3 Guidelines and t oolkit s
To com plem ent t his r eview of pr im ar y car e evaluat ions, w e w ould like t o dr aw at t ent ion t o eight r ecent ly published guidelines and ‘t oolkit s’ aim ed at helping healt h ( and ot her gr oups of) pr ofessionals exam ine and im prove t heir support for car er s. The guides ar e pr act ical, focusing on issues t hat hav e com e t o t he for e since t he launch of t he Nat ional St r at egy for Car er s ( Depar t m ent of Healt h, 1999) . While w e found no st udies t hat had ev aluat ed how useful t hey w er e, t hey do t ouch on issues r elev ant t o car er s’ access t o healt h car e. The ev idence base is st r onger for som e of t he docum ent s t han for ot her s, and in each case w e h av e in dicat ed t h e t y pe of ev iden ce accor din g t o t h e st u dy design t y pology . Making r efer ence t o t he guidelines and t oolkit s in a r epor t such as t his m ay :
• cont r ibut e t ow ar ds ov er com ing som e of t he bar r ier s t hat car er s face
• r educe t im e spent by pr ofessionals in ‘r einvent ing t he w heel’, and
• encour age w ider usage w it h a v iew t o som e form of assessm ent of t heir v alue.
3 . 1 Gu id e lin e s f or Pr im a r y H e a lt h Ca r e Te a m s:
Sout h Asia n Ca r e r s’ Pr oj e ct
( e vide nce ca t e gor y B3 )
Based on t heir st udy of Sout h Asian car er s, Kat bam na and colleagues ( 1998a, 1998b) have developed guidelines aim ed at providing recom m endat ions t o assist m em bers of prim ary healt h care t eam s in t heir work wit h carers from t his com m unit y.Som e of t he t opic ar eas cov er ed in t he guidelines include
com m unicat ion, inform at ion and recognit ion – par t icular ly in r elat ion t o cult ural and religious beliefs. These go som e w ay t o filling t he gap not ed earlier, nam ely t he lack of pr im ar y car e init iat iv es t ar get ing et hnic m inor it y car er s.
3 .2 Ta k in g Act ion t o Su p p or t Ca r e r s: A ca r e r s
im pa ct gu ide for com m ission e r s a n d m a n a ge r s
( e vide nce ca t e gor y C1 )
3 . 3 H ow Good is y ou r Se r v ice t o Ca r e r s? A
g u id e t o ch e ck in g q u a lit y st a n da r ds for loca l
ca r e r su ppor t se r v ice s
( e vide n ce ca t e gor y C1 )
The t hird guide ( Blunden, 2002) was also published by t he King’s Fund, and dr aw s on ex t ensiv e pilot w or k in v ar ious par t s of t he count r y . I t is designed t o help ser v ice or ganisat ions assess how w ell t hey ar e m eet ing a set of fiv e qualit y st andar ds for local ser v ices t o suppor t car er s w hich w er e dev eloped as par t of t he Nat ional St r at egy ( Depar t m ent of Healt h, 1999) . St andar d 4 cov er s any ser v ice t hat suppor t s car er s t o car e and m aint ain t heir ow n healt h and well- being. This includes prom ot ing good healt h for carers, which m ay m ean ‘sessions t o assist car er s t o look aft er t heir ow n phy sical and em ot ional healt h, relaxat ion and ot her t herapies’ ( p. 36) . Com plem ent ary t herapies delivered in car er s’ ow n hom es ar e discussed lat er in t he r epor t .
3 . 4 ‘Se v e n a n d a H a lf M in u t e s is n ot En ou g h ’: A
good pr a ct ice gu ide for ca r e r s, su ppor t w or k e r s
a n d GP p r a ct ice s
( e vide n ce ca t e gor y C2 )
This good pr act ice guide w as published by t he Pr incess Roy al Tr ust for Carers ( PRTC) in 1999 ( Warner, 1999) . The inform at ion included was based on int er v iew s and v isit s t o t hr ee PRTC cent r es w or k ing w it hin pr im ar y car e pr act ices, one of w hich w as Br ent Car er s Cent r e, discussed ear lier in t his r epor t . The guide m akes suggest ions t o help GPs, pr im ar y car e pr act ices and car er suppor t pr oj ect s dev elop effect iv e suppor t for car er s, including how t o ident ify car er s. Ther e is som e anecdot al infor m at ion about cost - ef f ect iv en ess, but t he aut hor st r esses t hat j udging t he effect iv eness for GPs of providing suppor t for car er s r equir es det ailed r ecor d k eeping by t he GP pr act ice as a w hole. Suggest ed m easures include: appoint m ent t im es and overruns; inappropriat e enquiries; prescript ion needs; em ergency and out - of - hours enquir ies; st r ess, exhaust ion, back inj ur ies and ot her car er- relat ed sym pt om s.
3 . 5 I d e n t if y in g Ca r e r s in Ge n e r a l Pr a ct ice
( e vide n ce ca t e gor y C2 )
The Spinney Pr act ice in St I v es, Cam br idgeshir e, w as aw ar ded ‘Beacon’ st at us in 1999 for it s Car er s Pr oj ect Gr oup. A docum ent cont aining a m odel for
accor ding t o t he needs and int er est s of t he pat ient s/ car er s, t he sur ger y ’s lev el of int er est and t im e const r aint s.
3 . 6 H ow t o En su r e y ou r Se r v ice is Re spon siv e
t o t h e N e e ds of Ca r e r s
( e vide n ce ca t e gor y C2 )
Anot her local init iat iv e, t he New cast le Car er s Pr oj ect , has pr oduced a ‘guide and act ion planning t ool’ ( New cast le Car er s Pr oj ect , 2002) . Local car er s and healt h ser v ice st aff w er e inv olv ed in dev eloping t he guide, w hich is int ended for use in a r ange of healt h car e set t ings including GP surgeries. The guide focuses on bot h pr ocess and out com es, and suggest s t hat healt h pr ofessionals fir st discuss w it h car er s w hat out com es t hey need and ex pect fr om com m unit y and hospit al- based healt h car e ser v ices. Follow - up work includes developing st r uct ur es t o ensur e t hat t he pr ocesses of ser v ice deliv er y achiev e car er s’ desir ed out com es.
3 .7 ‘A gu ide f or a sse ssin g ca r e giv e r n e e ds:
d e t e r m in in g a h e a lt h h ist or y d a t a b a se f or f a m ily
ca r e r s’
( e vide n ce ca t e gor y C2 )
A guide for doct or s t o use t o assess t he healt h of car er s and pr ov ide a dat abase on w hich t o est ablish an act ion plan has been dev eloped in t he US ( Melillo and Fut r ell, 1995) . The guide w as cr it iqued by t en ex per t pr act it ioner s in t he fields of ger ont ology, ger ont ological nur sing, nursing research and pr im ar y car e. The guide asks for infor m at ion about t he car er , t heir healt h st at us, em ploy m ent , r esour ces av ailable, r elat ionship w it h t he car e r ecipient , and t heir r at ing of t he lat t er ’s healt h and behav iour . The int ent ion is t hat t he doct or has an oppor t unit y t o pr ev ent ser ious healt h pr oblem s for t he car er by suggest ing healt h pr om ot ion st r at egies, r esour ces or educat ional pr ogr am m es. I t can be inser t ed int o t he car er ’s m edical r ecor ds and per iodically r ev iew ed dur ing v isit s t o t he doct or .
3 . 8 H e a lt h ca r e f or Ca r e r s
( e vide n ce ca t e gor y C2 )
Finally, a Healt h car e for Car er s pack aim ed at car er s of people w it h Par kinson’s disease has been dev eloped as t he r esult of a collabor at iv e par t ner ship
com plem ent s t he inform at ion gat hered by carers in t heir Help Your self t o
Healt h book let . The Educat ional Pack is designed t o provide inform at ion and
Sect ion 4 Hom e- based healt h care proj ect s
4 .1 Te le p h on e ca r e r g r ou p s
( I D num be r 3 9 ; e vide nce ca t e gor y B2 )
Descript ion of int ervent ion
Ov er a t w o- year period, t he Glenrose Rehabilit at ion Hospit al ( Edm ont on, Canada) used a quasi- exper im ent al design t o com par e t he im pact of t elephone car er gr oups w it h t r adit ional face- t o- f ace on - sit e car er gr oups. Car er s
par t icipat ing in t he st udy suppor t ed adult s w it h a br ain inj ur y . Bot h t y pes of gr oups m et w eek ly for nine t o t en w eek s; gr oups w er e led by a psy chologist , a neur opsy chologist or a social worker from wit hin t he Brain I nj ury Program m e. A w ide r ange of t opic ar eas w er e cov er ed, including dealing w it h st r ess, w ay s t o cope, and com m unit y r esour ces. The t elephone gr oup used t eleconfer encing t echnology .
Ba r r ie r s a ddr e sse d
Ser v ice issues; infor m at ion and know ledge issues. The t elephone car er gr oups aim ed t o ov er com e access pr oblem s faced by r ur al car er s because of t he dist ance t hey liv ed fr om t r eat m ent cent r es in r elat ion t o suppor t fr om healt h care professionals. By providing counselling, skills developm ent and educat ion, carers benefit ed by learning about , for exam ple, st ress m anagem ent
t echniques, coping st r at egies and av ailable ser v ices.
Evaluat ion
Pr ofessionals at t he hospit al ev aluat ed t he t w o t y pes of gr oups using st andar d o u t com e m easures exam ining fam ily funct ioning, carer burden and carer st ress. Pre- and post - t est m easur es w er e t ak en, w hich w er e also r epeat ed six m ont hs aft er t he last day of t he gr oup. I n addit ion, a sat isfact ion quest ionnair e w as adm inist ered at t he last gro up session.
Ou t com e s
Car er s w er e all k een t o seek help in or der t o deal w it h t he st r ess associat ed w it h coping w it h som eone w it h a br ain inj ur y . The r esult s show ed t her e w er e sim ilar am ount s of im provem ent s for t he out com es from bot h t ypes of groups. How ever, rural carers t aking part in t he t elephone groups report ed experiencing low er car er bur den, less r epor t ed dist r ess and few er difficult ies in fam ily
funct ioning t han did car er s in t he on- sit e groups. Furt herm ore, t elephone group par t icipant s r epor t ed slight ly higher lev els of sat isfact ion. The r esear cher s concluded t hat t he use of t elephone t echnology for gr oups w as a w ay of pr ov iding a specialt y healt h ser v ice accessible t o car er s w ho ar e geogr aphically isolat ed fr om ur ban t r eat m ent cent r es, and in t his w ay could br idge t he
St r e ngt hs of t he st r uct ur e , pr oce ss a nd out com e s of t he
int ervent ion
The r esear cher s w er e anx ious t hat t he lack of per sonal cont act for t elephone group carers m ight hav e had a det r im ent al effect . I n fact , t hese par t icipant s r epor t ed slight ly higher sat isfact ion lev els, leading t he r esear cher s t o speculat e w het her t he anony m it y pr ov ided by t he t elephone and t he conv enience of r eceiv ing t he ser v ice at hom e w er e beneficial.
The cost s of deliv er ing ser v ices by long- dist ance t eleconfer encing av er aged $375 per person for a nine- t o t en - session group series. Given t he expenses associat ed w it h alt er nat iv e st r at egies, for inst ance sending pr ofessionals t o rural com m unit ies, t he r esear cher s concluded t hat t elephone gr oups pr ov ided a cost - effect iv e m et hod of pr ov iding suppor t t o car er s w ho liv ed out side an ur ban cent r e. They not ed t hat since t he st udy ended, t he hospit al has been able t o r educe long dist ance cost s consider ably .
W e a k ne sse s of t he st r uct ur e , pr oce ss a nd out com e s of t he
int ervent ion
The aut hor s r eflect on lim it at ions t o t he st udy ( for inst ance, r elat iv ely sm all sam ple size) , but do not r epor t on any w eaknesses in r elat ion t o ar r angem ent s for eit her t he t elephone gr oups or t he on- sit e gr oups.
Key learning point s
• Telephone gr oups offer a m et hod of pr ov iding suppor t and educat ion t o r ur al/ isolat ed car er s t hat appear s t o be as effect iv e as t r adit ional in-person on- sit e gr oups.
• Telephone gr oups ar e a cost - ef f ect iv e w ay t o suppor t car er s w ho liv e out side ur ban cent r es.
4 . 2 Com p u t e r Lin k
( I D num be r 4 0 ; e vide nce ca t e gor y B1 )
NB: Ex cept ionally , t his account also dr aw s on t hr ee ot her ar t icles about Com put erLink, which included m ore det ailed inform at ion about
m et hodology, st r engt hs and w eak nesses of t he sy st em ( Br ennan et al. , 1991; Brennan et al., 1992; Bass et al., 1998) .
Descript ion of int ervent ion
Com put er Link w as a com put er suppor t net w or k for car er s of people w it h Alzheim er ’s disease. The m ost w idely used feat ur e w as t he com m unicat ions com ponent , w hich included a pr iv at e e- m ail syst em , a public elect ronic bullet in boar d and a quest ion- and- answ er segm ent facilit at ed by t he nur se m oder at or . I n addit ion, t her e w as also a four - m odule elect r onic ency clopedia on
problem s and dilem m as. Com put erLink was accessible 24 hour s a day , sev en day s a w eek , and w as housed on t he Clev eland public access com put er
net w or k Fr ee- Net . Term inals w ere inst alled in carers’ hom es by a proj ect nurse, who also provided t raining last ing about 90 m inut es.
Ba r r ie r s a ddr e sse d
Ser v ice issues; car er or car e r ecipient char act er ist ics; infor m at ion and knowledge issues. Com put erLink helped overcom e logist ical problem s in obt aining t r anspor t at ion and/ or finding subst it ut e car e in or der t o leav e t he hom e. Car er s could obt ain psy chosocial support , inform at ion and advice from healt h car e pr ofessionals and ot her car er s. By discussing t heir sit uat ion anonym ously, som e of t he bar r ier s car er s m ight per ceive in face- t o- f ace int er act ions w er e r em ov ed.
Evaluat ion
Com put erLink was evaluat ed in a 12- m ont h random ised cont rolled t rial. Out of t he full sam ple of 96 carers, som e 47 w ere allocat ed t o an experim ent al group and r eceived a t er m inal m odem syst em ( cost cover ed by gr ant funds) ; 49 car er s in t he cont r ol gr oup did not hav e access. Pr e - and post - int er v ent ion dat a collect ion included a m ix of st andar d out com e m easur es and also it em s dev eloped specifically for t he pr oj ect . Com put er Link usage w as m easur ed, and a cont ent analy sis of car er s’ m essages t o t he public bullet in boar d w as
undert aken
Ou t com e s
Ov er all, Com put er Link appear ed t o be an effect iv e t ool for r educing st r ain for som e carers. Reduct ions in st rain were great er for carers wit h m ore inform al suppor t and for spouse car er s. Com put er Link pr ov ided t hr ee t y pes of
psy chosocial suppor t : inst r um ent al ( t he provision of inform at ion about m et hods of assist ance, and com m unit y , hom e car e and self - car e r esour ces av ailable t o carers) ; em ot ional ( sym pat hy, underst anding and a sense of com m unit y) ; and spirit ual ( t he offering of script ure, prayer or inspirat io n) .
St r e ngt hs of t he st r uct ur e , pr oce ss a nd out com e s of t he
int ervent ion
Com put er Link w as accessible 24 hour s a day and hence could pr ov ide suppor t out side pr ofessional office hour s. This r eady av ailabilit y m eant t hat car er s could use t he sy st em at t im es t hat w er e conv enient for t hem , w it hout hav ing t o leav e hom e and/ or fit in w it h t he schedules of pr ofessionals or ot her car er s. Because t he com put er m essages post ed t o t he com put er r em ained per m anent , t he cont ent could be r et ained and accessed for long per iods of t im e.
