Tag Archives: clinical nurse specialists

Specialist key workers make a real difference to children with cancer and their families

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Independent evaluation supports the NICE 2005 recommendation that all children with cancer should be supported by “an appropriately skilled, professional key worker”. Simon Morgan-Jones, CLIC Sargent Services Manager simon morgan-jones-croppedoutlines the positive benefits that specialist key workers can make to children with cancer and their families.

Over the past four years children and young people’s cancer charity, CLIC Sargent, has funded a project to test whether a key working model could improve the care and support available to children with cancer and their families during cancer treatment.

It is ten years since NICE (2005) recommended that all children with cancer should be supported by an “appropriately skilled, professional key worker”. CLIC Sargent further recommended a key worker model of care in our ‘More Than My Illness’ report. However, it was widely accepted at the time of the NICE guidance that the recommendation was based mostly on professional opinion as there was limited research evidence for such roles.

Consequently, CLIC Sargent proposed a UK-wide project to help the NHS understand and test this key worker model of care through the CLIC Sargent nursing programme – with an independent evaluation to test the model and to evaluate service user outcomes.  

CLIC SARGENT IMAGE

The project was funded through a corporate fundraising partnership and took place in all the main treatment centres for childhood cancer in England, Wales and Scotland, involving 22 specialist nurses. The independent evaluation was jointly funded by NHS England (originally NCAT) and CLIC Sargent in Wales & Scotland and conducted by London South Bank University.

Overall the report demonstrates that the specialist key worker role can and (when it works well) does achieve the following outcomes:

  • Improvement in the child’s and family’s experience of their care and treatment
  • Families are able to spend more time at home, and children with cancer can be cared for closer to home
  • Improved emotional wellbeing
  • Children / young people are better able to participate in education
  • Best practice and learning is adopted by local hospital teams

For key working to work well three pillars have to be in place: knowledge, relationship and coordination.

  • Knowledge: the key worker being a specialist nurse with knowledge, experience and expertise in childhood cancer led to a higher standard of care, helping families have the confidence to care for their child at home.
  • Relationship: the relationship between the key worker and the family over a period of time enabled trust to grow; families felt like they were supported by someone who knew them as a family.
  • Coordination: the key worker worked effectively with hospital clinicians, physiotherapists, play specialists, GPs, social workers, schools, dieticians and other hospital and community based services, coordinating children’s care and support to help them live as normal a life as possible. They were seen by parents as a reliable, consistent, approachable source of support.

Each of these three pillars is crucial to the success of the role. If any pillar is missing, the experience of the family is diminished. But with the three pillars in place, and the role embedded, understood and supported within the children’s cancer multi-disciplinary team (MDT), the key worker can make a make a real difference for children with cancer and their families.

This project allowed the Children’s Cancer community a unique opportunity to drive something forward and at the same time review and understand it.

I think the Key Worker project will stand as an exemplar of how to deliver a project with improving outcomes for service users at its core, whilst contributing to the UK evidence base for both specialist nursing and key working. It is also a demonstration of how to work in true collaboration and partnership between the NHS, academic institutions and the voluntary sector, and also how to work across the fields of health, social care and education.

The independent evaluation of the key worker project and the More Than My Illness reports are all available in the Professionals section of the CLIC Sargent website

CLIC Sargent provides emotional, practical, financial and clinical support to children and young people affected by cancer and their families to help them cope with cancer and get the most out of life.

For further information on the project contact Simon Morgan-Jones, CLIC Sargent Services Manager

Follow @CLIC_Sargent on Twitter or like them on Facebook

Mae gweithwyr allweddol arbenigol yn gwneud gwahaniaeth go iawn i fywydau plant â chanser a’u teuluoedd

simon morgan-jones-croppedMae’r gwerthusiad annibynnol yn cefnogi argymhelliad NICE 2005 y dylai holl blant â chanser gael eu cefnogi gan “weithiwr allweddol proffesiynol, â medrau priodol”. Amlinella Simon Morgan-Jones, Rheolwr Gwasanaethau CLIC Sargent y manteision cadarnhaol y gall gweithwyr allweddol arbenigol eu gwneud i blant â chanser a’u teuluoedd.

Dros y pedair blynedd diwethaf mae CLIC Sargent, yr elusen ganser plant a phobl ifanc, wedi ariannu prosiect i brofi a allai model gweithiwr allweddol wella’r gofal a’r cymorth sydd ar gael i blant sydd â chanser a’u teuluoedd yn ystod triniaeth ganser.

Mae deng mlynedd ers i NICE (2005) argymell y dylai pob plentyn sydd â chanser gael cymorth “gweithiwr allweddol proffesiynol â sgiliau cymwys”. At hynny argymhellodd CLIC Sargent fodel gofal gweithiwr allweddol yn eu hadroddiad ‘More Than My Illness’. Ond, cafodd ei dderbyn yn gyffredinol adeg arweiniad NICE mai ar farn broffesiynol yn bennaf yr oedd yr argymhelliad wedi’i seilio gan mai prin oedd y dystiolaeth ymchwil ar gyfer rolau o’r fath.

O ganlyniad, cynigiodd CLIC Sargent brosiect ledled y DU i helpu’r GIG i ddeall y model gofal hwn gyda gweithiwr allweddol, ac i’w brofi. Gwnaed hyn drwy raglen nyrsio CLIC Sargent – gyda gwerthusiad annibynnol i brofi’r model ac i werthuso canlyniadau defnyddwyr gwasanaeth.

CLIC SARGENT IMAGE

Ariannwyd y prosiect drwy bartneriaeth godi arian gorfforaethol a digwyddodd ym mhob un o’r prif ganolfannau triniaeth ar gyfer canser plentyndod yng Nghymru, Lloegr a’r Alban, gan gynnwys 22 nyrs arbenigol. Ariannwyd gwerthusiad annibynnol gan GIG Lloegr (NCAT yn wreiddiol) a CLIC Sargent yng Nghymru a’r Alban, a gwnaed y gwaith gan Brifysgol South Bank Llundain.

Ar y cyfan mae’r adroddiad yn dangos bod y rôl gweithiwr allweddol arbenigol yn gallu cyflawni’r canlyniadau canlynol a (phan fydd yn gweithio’n dda) ei bod llwyddo i wneud hynny:

  • Gwella profiad y plentyn a’r teulu o’r gofal a’r driniaeth
  • Gall teuluoedd dreulio mwy o amser gartref, a gall plant sydd â chanser gael gofal yn nes adref
  • Mae’n gwella lles emosiynol
  • Mae plant / pobl ifanc yn fwy abl i gymryd rhan mewn addysg
  • Mae timau ysbyty lleol yn mabwysiadu’r arferion a’r dysgu gorau

Er mwyn i’r gweithio allweddol weithio’n dda rhaid i dair colofn fod yn eu lle: gwybodaeth, perthynas a chydlynu.

  • Gwybodaeth: pan oedd y gweithiwr allweddol yn nyrs arbenigol gyda gwybodaeth, profiad ac arbenigedd mewn canser plentyndod, roedd safon y gofal yn uwch, fel bod gan deuluoedd hyder i ofalu am eu plentyn gartref.
  • Perthynas: roedd y berthynas rhwng y gweithiwr allweddol a’r teulu dros gyfnod o amser yn galluogi ymddiriedaeth i dyfu; teimlai’r teuluoedd eu bod yn cael eu cynorthwyo gan rywun a oedd yn eu hadnabod fel teulu.
  • Cydlynu: roedd y gweithiwr allweddol yn gweithio’n effeithiol gyda chlinigwyr ysbyty, ffisiotherapyddion, arbenigwyr chwarae, meddygon teulu, gweithwyr cymdeithasol, ysgolion, dietegwyr a gwasanaethau eraill mewn ysbytai a chymunedau, yn cydlynu gofal a chymorth i blant i’w helpu i fyw bywyd mor normal ag sy’n bosibl. Roedd y rhieni’n eu hystyried yn ffynhonnell cymorth dibynadwy, cyson, hawdd mynd ati.

Mae pob un o’r tair colofn yn hanfodol i lwyddiant y rôl. Os yw unrhyw golofn ar goll, nid yw profiad y teulu gystal. Ond pan fydd y tair colofn yn eu lle, a’r rôl wedi’i sefydlu, wedi’i deall a’i chefnogi o fewn y tîm amlddisgyblaethol canser plant (MDT), mae’r gweithiwr allweddol yn gallu gwneud gwahaniaeth go iawn i blant sydd â chanser a’u teuluoedd.

Rhoddodd y prosiect hwn gyfle unigryw i’r gymuned Canser Plant i yrru rhywbeth ymlaen ac ar yr un pryd ei adolygu a’i ddeall.

Rwy’n credu y bydd y prosiect Gweithiwr Allweddol yn enghraifft o sut i gyflwyno prosiect sydd â chanlyniadau gwell i’r defnyddwyr gwasanaeth sy’n ganolog iddo, ac ar yr un pryd mae’n cyfrannu i gronfa dystiolaeth y DU ar gyfer nyrsio arbenigol a gweithio allweddol hefyd. Yn ogystal mae’n dangos sut mae modd cydweithio go iawn ac mewn partneriaeth rhwng y GIG, sefydliadau academaidd a’r sector gwirfoddol, a hefyd sut mae gweithio ar draws meysydd iechyd, gofal cymdeithasol ac addysg.

Mae gwerthusiad annibynnol y prosiect gweithwyr allweddol ac adroddiad ‘More Than My Illness’ i gyd ar gael yn adran Gweithwyr Proffesiynol gwefan CLIC Sargent.

Mae CLIC Sargent yn cynnig cymorth emosiynol, ymarferol, ariannol a chlinigol i blant a phobl ifanc sydd wedi’u heffeithio gan ganser a’u teuluoedd i’w helpu i ymdopi â chanser ac i fanteisio i’r eithaf ar fywyd.

I gael rhagor o wybodaeth am y prosiect cysylltwch â Simon Morgan-Jones, Rheolwr Gwasanaethau CLIC Sargent.

Dilywnch @CLIC_Sargent ar Twitter neu hoffwch nhw ar Facebook

Notes / Nodiadau 

CLIC Sargent. More Than My Illness: Delivering quality care for children with cancer. Report; 2009.
CLIC Sargent. More Than My Illness: Delivering quality care for young people with cancer. Report; 2010.
National Institute for Health and Clinical Excellence (NICE). Improving Outcome Guidance for Children and Young People with Cancer; 2005.

 

It’s time to challenge widespread beliefs about cancer

Sgroliwch i lawr ar gyfer y blog Cymraeg

Helen Tyler 001Helen Tyler, Macmillan Head of Therapies at Velindre Cancer Centre in Cardiff, believes that person-centred care should be “enabling, coordinated, dignified and respectful.” As survival rates for cancer improve, Helen argues that we should be using a variety of methods to encourage people affected by cancer to live as healthy and as active a life as possible- for as long as possible.

The dramatic improvements in survival rates mean that we need to challenge widespread beliefs about cancer.

Cancer is increasingly an illness which might be cured or which might have the characteristics of a long term or chronic condition that people can live with for many years.

For the increasing numbers of people living with and beyond cancer, their carers, and their families, it is very important that they have the support and services that they need to make adjustments to the changes which have occurred as a result of the disease or its treatment.

People affected by cancer should be able to reach their maximum potential and achieve the best possible quality of life. RS10366__T0C6722-hpr ALT

The vision of the Velindre Cancer Centre Therapies team (which includes physiotherapy, occupational therapy, dietetics, speech and language therapy, working in close collaboration with clinical psychology and complementary therapies), is to ensure that people living with and beyond cancer have a personalised holistic needs assessment at diagnosis.  This assessment should repeated at intervals during the cancer journey to gather and discuss information to understand what the person living with and beyond cancer knows, understands and needs.

A personalized holistic needs assessment should be focused on the whole person:

  • Physical
  • Practical
  • Emotional
  • Spiritual
  • Psychological
  • Social
  • Environmental
  • Financial

From this assessment, a co-productive, person-centred care plan is provided with relevant information to empower patients to manage their condition. Person-centred care should be enabling, coordinated, dignified and respectful

Ten Top Tips for patients affected by cancer to promote self-management

My ten top tips for patients affected by cancer to promote co-productive, supported, self-management are:

  1. Discuss your needs and develop a care plan
  2. Ask about a treatment summary
  3. Find your main contact
  4. Be aware of any post-treatment symptoms
  5. Get support with day to day concerns
  6. Talk about how you feel
  7. Try to lead a healthier life style
  8. Know what to look out for
  9. Be aware of your own health
  10. Share your experiences

Coordination across primary and secondary care and across health and social care is also necessary. There should also be a requirement for the routine use of patient reported outcome measures to monitor problems as defined by the patients.

During, and following cancer treatment, some people will be left with physical or psychological problems which affect their health and wellbeing. There are some very practical actions that can be taken to make a difference to people following cancer treatment.

Our vision is for people to be informed and prepared for the long term effects of living with and beyond cancer, and that health and care services are responsive to individual needs to ensure access to specialist care when needed. This may be achieved from:

Information, education or advice e.g.:

  • leaflets
  • top tips
  • use of media

Group treatment interventions e.g.:

Individual complex care e.g:

Our strategy is that people affected by cancer are supported to live as healthy and active a life as possible for as long as possible. For some, cancer can be an ‘acute illness’ which can be cured by initial treatment. Being ‘cured’ however does not mean one is necessary well.

Chronic consequences of treatment may need to be managed over months and years, consequences which often have a devastating impact on daily life. For those with advanced disease, we want to support them to have an active and independent life as possible.

If you’re living with or looking after someone with cancer and need information or support, call 0808 808 00 00 or visit www.macmillan.org.uk.

Macmillan Cancer Support in Wales believes that every person with cancer should have a holistic needs assessment undertaken using a validated tool. The outcomes from this discussion, and the actions agreed with the patient should be set out in a written care plan, a copy of which should be offered to the patient. Read more about our Manifesto calls.

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Mae’n bryd herio’r syniadau cyffredin am ganser

Mae Helen Tyler, Pennaeth Therapïau Macmillan yng Nghanolfan Canser Felindre yng Nghaerdydd, yn credu y dylai gofal sy’n canolbwyntio ar unigolion fod yn “galluogi, wedi’i gydlynu, yn urddasol ac yn parchu.” Wrth i’r cyfraddau goroesi ar gyfer canser wella, mae Helen yn dadlau y dylem fod yn defnyddio amrywiaeth o ddulliau i annog y rhai sydd wedi’u heffeithio gan ganser i fyw bywyd mor iach a phrysur ag sy’n bosibl – cyn hired ag sy’n bosibl.Helen Tyler 001

Gan fod cyfraddau goroesi wedi gwella’n syfrdanol, mae angen inni herio syniadau cyffredin am ganser. Yn fwyfwy, mae canser yn afiechyd a allai gael ei wella neu a allai fod â nodweddion cyflwr tymor hir neu gronig y gall pobl fyw gydag ef am nifer o flynyddoedd.

Felly mae’n bwysig iawn fod y nifer cynyddol o bobl sy’n byw gyda chanser a’r tu hwnt iddo, eu gofalwyr a’u teuluoedd yn cael y cymorth a’r gwasanaethau sydd eu hangen arnyn nhw i addasu’r newidiadau sydd wedi digwydd o ganlyniad i’r clefyd neu’r driniaeth, a hynny fel y gallant gyflawni eu potensial mwyaf posibl a chael yr ansawdd bywyd gorau posibl.

Gweledigaeth tîm Therapïau Canolfan Ganser Felindre sy’n cynnwys Ffisiotherapi, Therapi Galwedigaethol, Dieteteg, Therapi Lleferydd ac Iaith, gan gydweithio’n agos â Seicoleg Glinigol a Therapïau Cyflenwol, yw sicrhau bod y rhai sy’n byw gyda chanser a’r tu hwnt iddo’n cael asesiad anghenion cyfannol wedi’i bersonoli adeg y diagnosis, a bod hynny’n cael ei ailadrodd bob hyn a hyn ar hyd eu taith ganser i gasglu a thrafod gwybodaeth er mwyn deall yr hyn y mae’r person sy’n byw gyda chanser a’r tu hwnt iddo’n ei wybod, ei ddeall a beth sydd ei angen arno.

Dylai ganolbwyntio ar y person cyfan:

  • Yn gorfforol
  • Yn ymarferol
  • Yn emosiynol
  • Yn ysbrydol
  • Yn seicolegol
  • Yn gymdeithasol
  • Yn amgylcheddol
  • Yn ariannol

O’r asesiad hwn, darperir cynllun gofal ar y cyd sy’n canolbwyntio ar yr unigolyn gyda gwybodaeth berthnasol fel y gall cleifion reoli eu cyflwr. Dylai gofal sy’n canolbwyntio ar yr unigolyn alluogi, dylai gael ei gydlynu, dylai fod yn urddasol ac yn dangos parch.

10 Awgrym Gwych ar gyfer cleifion er mwyn hyrwyddo hunanreoli ar y cyd, gyda chymorth:

  1. Trafodwch eich anghenion a datblygu cynllun gofal
  2. Gofynnwch am grynodeb o’r driniaeth
  3. Dewch o hyd i’ch prif berson cyswllt
  4. Byddwch yn ymwybodol o unrhyw symptomau ar ôl y driniaeth
  5. Gofynnwch am gymorth gyda phryderon o ddydd i ddydd
  6. Siaradwch am sut rydych chi’n teimlo
  7. Ceisiwch ddilyn ffordd o fyw iachach
  8. Dewch i wybod am beth y dylech chi gadw llygad
  9. Byddwch yn ymwybodol o’ch iechyd eich hun
  10. Rhannwch eich profiadau

 Mae angen cydlynu ar draws gofal cynradd ac uwchradd ac ar draws gofal iechyd a gofal cymdeithasol hefyd. Mae gofyn defnyddio fel mater o drefn fesurau canlyniadau y mae’r cleifion yn rhoi gwybod amdanyn nhw i fonitro problemau fel y’u diffiniwyd gan y cleifion.

RS10366__T0C6722-hpr ALTYn ystod triniaeth ganser ac ar ei ôl bydd rhai pobl â phroblemau corfforol neu seicolegol sy’n effeithio ar eu hiechyd a’u lles. Mae rhai camau ymarferol iawn y gellir eu gwneud i wneud gwahaniaeth i bobl ar ôl triniaeth ganser.

Ein gweledigaeth yw i bobl gael gwybodaeth am effeithiau tymor hir byw gyda chanser a’r tu hwnt iddo a’u bod yn barod amdanynt, a bod gwasanaethau iechyd a gofal yn ymateb i anghenion unigolion er mwyn sicrhau eu bod yn cael mynediad i ofal arbenigol pan fydd angen. Gall hyn fod ar ffurf:-

  • Gwybodaeth, addysgu neu gyngor, e.e.:
    • taflenni
    • awgrymiadau gwych
    • defnyddio’r cyfryngau
  • Ymyriadau triniaeth grŵp, e.e.:
    • rheoli blinder
    • rheoli pwysau
    • rheoli pryder
    • ymwybyddiaeth ofalgar (Mindfulness)
    • byw gydag ansicrwydd
    • rheoli gweithgarwch corfforol
    • adsefydlu galwedigaethol
  • Gofal cymhleth unigol, e.e.:
    • ffisiotherapi – symudedd, swyddogaeth, aciwbigo
    • therapi galwedigaethol – darparu cymhorthion ac addasiadau
    • dieteg – gofynion maethol a diet penodol
    • therapi Lleferydd ac Iaith – llyncu, cyfathrebu
    • therapi cyflenwol – Adweitheg (Reflexology), tylino’r corff

Ein strategaeth yw y dylai rhai sydd wedi’u heffeithio gan ganser gael cymorth i fyw bywyd mor iach ac egnïol ag sy’n bosibl gyhyd ag sy’n bosibl. I rai, gall canser fod yn ‘afiechyd acíwt’ y gellir ei wella drwy driniaeth gychwynnol. Ond dyw ‘cael eich gwella’ ddim yn golygu eich bod chi’n iach o angenrheidrwydd. Efallai bydd angen rheoli canlyniadau cronig triniaeth dros fisoedd a blynyddoedd, canlyniadau sy’n aml yn cael effaith ddinistriol ar fywyd bob dydd. Gyda’r rhai sydd â’r afiechyd wedi datblygu ymhellach, rydym eisiau eu cynorthwyo er mwyn iddyn nhw gael bywyd mor egnïol ac annibynnol ag sy’n bosibl.

Os ydych chi’n byw gyda rhywun sydd â chanser arno neu’n gofalu am rywun fel hyn, a bod arnoch angen gwybodaeth neu gymorth, ffoniwch 0808 808 00 00 neu ewch i  www.macmillan.org.uk.

Mae Cymorth Canser Macmillan  yng Nghymru’n credu y dylai pob un sydd â chanser gael asesiad anghenion cyfannol wedi’i wneud gan ddefnyddio adnodd wedi’i ddilysu. Dylai canlyniadau’r drafodaeth hon, a’r camau gweithredu y cytunwyd arnynt gyda’r claf gael eu gosod mewn cynllun gofal ysgrifenedig, a dylai’r claf gael cynnig copi ohono. Darllenwch ragor am y pethau y mae ein  Maniffesto yn galw amdanynt.
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