Category Archives: Person-centred care

Arolwg Profiad Cleifion Canser Cymru

Susan Morris

Susan Morris

Gan Susan Morris, Pennaeth Gwasanaethau (Cymru)

Pan fyddwch chi’n sâl, mae’r pethau bach mae pobl sy’n eich trin yn eu gwneud yn gallu golygu llawer iawn.

O sut rydych chi’n clywed bod gennych chi salwch i gael gwybod beth i’w ddisgwyl, mae’r pethau hyn i gyd yn dylanwadu ar sut rydym ni’n teimlo am ein gofal.

O’u gwneud yn dda, maen nhw’n gallu gwneud i ni deimlo ein bod ni’n cael ein gwerthfawrogi, ein clywed a’n cefnogi. Pan nad ydyn nhw’n cael eu gwneud cystal, maen nhw’n gallu gwneud i ni deimlo’n ofidus, ein bod ni’n cael ein hanwybyddu ac yn ysgwyd ein hymddiriedaeth.

Y llynedd, am yr ail dro, cynhaliodd Macmillan Cymru Arolwg Profiad Cleifion Canser Cymru gyda Llywodraeth Cymru i’n helpu ni i ddeall sut mae pobl sy’n cael eu trin am ganser yn teimlo am eu gofal.

Cafodd yr arolwg ei bostio at 11,000 o bobl a gafodd eu trin am ganser yng Nghymru yn 2015 i ofyn am eu barn ar bob agwedd ar eu gofal canser.

Rwyf wrth fy modd i 6,714 o bobl (65%) roi eu hamser i ddweud wrthyn ni am eu gofal a’n bod ni’n lansio’r canlyniadau heddiw.

Beth ddywedodd pobl wrthym ni?

At ei gilydd, teimlai pobl yn bositif am eu gofal canser gyda 93 y cant yn graddio eu gofal o leiaf 7 allan o 10 (ar raddfa o 0-10 lle roedd 10 = da iawn), sy’n newyddion ardderchog.

Dwedodd 97 y cant o bobl fod eu holl opsiynau triniaeth wedi eu hesbonio iddyn nhw, sy’n bwysig mewn gofal canser lle mae’n bosibl y bydd amrywiol driniaethau i ddewis o’u plith.

Dwedon nhw wrthym ni fod cael nyrs glinigol arbenigol wedi cael effaith hynod o gadarnhaol ar eu profiad ac roedden nhw’n fwy positif ar 73 allan o 74 o gwestiynau’r arolwg.

Ond dywedodd pobl wrthym ni fod yna feysydd i’w gwella hefyd.

Mae cynllun canser Cymru yn dweud y dylai anghenion pawb gael eu hasesu a dylen nhw gael cynnig cynllun gofal ysgrifenedig i’w helpu i ymdrin â phryderon ehangach fel cyllid, cefnogaeth emosiynol a grwpiau cymorth.

Ond dwedodd llai nag un o bob pump (18%) o bobl yn yr arolwg eu bod wedi cael cynllun gofal ysgrifenedig.

Mae’r cynllun canser yn dweud hefyd y dylai pawb sydd wedi cael diagnosis o ganser gael gwybodaeth am sut i gyrchu cyngor a chefnogaeth ariannol – ond llai na hanner y bobl (48%) a gafodd gynnig y gefnogaeth hon.

Mae’r arolwg yn dangos rhai enghreifftiau gwych o ofal canser sy’n cael ei ddarparu’n dosturiol mewn modd sy’n bodloni anghenion pobl â chanser.

Ond mae’n dangos hefyd bod gwaith i’w wneud mewn meysydd allweddol gan gynnwys yr wybodaeth sy’n cael ei rhoi i bobl, eu cynlluniau gofal a chael eu cymryd o ddifrif gan eu meddyg teulu pan fyddan nhw’n amau y gallai fod canser ganddyn nhw.

Beth fydd Macmillan Cymru yn gwneud gyda’r canlyniadau?

Byddwn ni’n edrych ar y canlyniadau i amlygu meysydd sy’n gweithio’n dda y gallai pobl eraill ddysgu ohonyn nhw ac i ymgyrchu am welliannau lle mae eu hangen.

Byddwn ni’n gweithio gyda’r byrddau iechyd i’w cefnogi i ddatblygu gwasanaethau newydd a dulliau o wella eu gofal canser.

Byddwn ni’n darparu cyfleoedd dysgu a hyfforddi i weithwyr proffesiynol Macmillan a staff sy’n gweithio gyda phobl â chanser.

Byddwn hefyd yn gofyn i’r cyhoedd am eich barn ar y canlyniadau ac am ofal canser drwy gydol yr haf mewn digwyddiadau fel Sioe Frenhinol Cymru a’r Eisteddfod Genedlaethol.

Hoffwn i ddiolch i bawb a gwblhaodd yr arolwg – bydd eich profiadau chi’n ein helpu i ddeall beth sy’n gweithio’n dda mewn gofal canser yng Nghymru a ble mae angen i bethau wella.

  • Beth yw’ch profiad chi o ofal canser yng Nghymru? Gadewch i ni wybod ac ymunwch â’r sgwrs ar Twitter gan ddefnyddio’r hashtag #wcpes17.

Caring for someone with cancer? Tell us what’s working – or what’s not…

Do you support a family member, friend or neighbour with cancer? In April 2016, the
Welsh Government
introduced a new law – the Social Services and Well-being (Wales) Act – with provisions to improve support for carers. The Government now wants to understand what’s working and what’s not.

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Greg Pycroft, Policy Officer,Wales

If you look after someone with  cancer, or are a professional supporting people affected by cancer, we’d love to hear from you.

The new law made two important changes:

Councils must assess the needs of a carer

Your council must undertake a carer’s needs assessment if it appears to them that a person has needs because of their caring responsibilities. It applies regardless of the council’s view of the level of support the carer needs or the level of the financial resources of the carer or the person needing care.

The assessment must:

  • assess the extent to which the carer is able and willing to provide the care and to continue to provide the care
  • include the outcomes the carer wishes to achieve
  • consider whether the carer wishes to work and participate in education, training or leisure activities
  • identify the extent to which support, preventative services, or the provision of information, advice or assistance or any other matters could help achieve the agreed outcomes.

If the carer is a child – the outcomes the parent or guardian of that child wishes to achieve for them must be included in the assessment. The assessment must also have regard to the developmental needs of the child and the extent to which it is appropriate for that person to provide care. This should lead to the council considering whether a child carer is a child with unique care and support needs.

In carrying out the assessment, the council must involve the carer and where feasible the person needing care.

Combining assessments.

Councils may carry out a carer’s needs assessment for a person at the same time as it, or another public body, carries out another assessment. For instance, they might work with the NHS trust or Local Health board to jointly assess needs.

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David and Pat Phillips. The couple were supported by Macmillan after David’s cancer diagnosis.

If you look after someone with cancer or support people who do, have you seen a change since April 2016? Does the description of the new law fit with your experience? Have you had a combined assessment or know someone who has?

You can help us understand what is working – and what’s not. 

If you’ve had an experience since the 1 April 2016 and you want to share please contact Greg Pycroft.

Any contributions will be kept anonymous and free of personal identifiable information. However, we will need to be able to identify some key details, such as local authority area or local health board to ensure that any issues can be followed up by the Welsh Government.

Macmillan and Cwm Taf work together to plan new £6.75m specialist care unit

Macmillan Cancer Support and Cwm Taf University Health Board are planning to build a new £6.75m specialist care unit near Llantrisant.

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The charity and the health board have applied for planning permission to develop the state-of-the-art unit at Royal Glamorgan Hospital.

If the plans are approved, Macmillan would contribute £5m towards the unit making it their biggest single investment in Wales.

The specialist eight-bed unit would provide inpatient, outpatient and day palliative care and support for people with incurable cancer and other conditions.

Palliative care for cancer patients in the Rhondda is currently provided at Y Bwthyn Pontypridd Cottage Hospital.

Although the quality of care at Y Bwthyn is known to be excellent, its location means that patients need to be transferred to Royal Glamorgan Hospital to access specialist tests and treatments, which can be difficult and distressing.

Similarly, some patients who go to Royal Glamorgan Hospital may benefit from being in a palliative care environment, but are too unwell to be transferred to Y Bwthyn.

Dr Ian Back, Consultant in Palliative Medicine at Cwm Taf University Health Board said: “A new state-of-the-art specialist unit would provide patients with the high-quality care they need in a comfortable environment for both them and their loved ones.

“Building the new unit at Royal Glamorgan Hospital will also ensure that patients have access to specialist tests and treatment more easily without the need for unnecessary transfers between hospitals when they are often too unwell.”

Susan Morris, Head of Services for Macmillan Cancer Support in Wales, said: “We are pleased to be working with Cwm Taf University Health Board on this proposed unit, which we believe would help people to receive palliative care more easily in a comfortable environment.

“After extensive consultation with staff and patients, the unit would be designed using Macmillan’s expertise and understanding of the needs of people with cancer and their families, including a kitchen and communal areas where they can spend time together.

“If the plans are approved, it will be Macmillan’s biggest single investment in Wales, which we can only fund thanks to the public’s generosity and support.”

John Palmer, Director of Primary, Community and Mental Health Services at Cwm Taf University Health Board said: “We are delighted to continue to build on our excellent relationship with Macmillan Cancer Support. The plan is for this unit to have a world-class addition to our rapidly developing palliative care service.”

If the plans are approved, work would be expected to start later this year with the centre projected to open in late 2018 or early 2019.

Macmillan a Chwm Taf yn gweithio gyda’i gilydd i gynllunio uned gofal arbenigol newydd gwerth £6.75m

Mae Cymorth Canser Macmillan a Bwrdd Iechyd Prifysgol Cwm Taf yn bwriadu adeiladu uned gofal arbenigol newydd gwerth £6.75m ger Llantrisant.

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Mae’r elusen a’r bwrdd iechyd wedi cyflwyno cais am ganiatâd cynllunio i ddatblygu uned o’r radd flaenaf yn Ysbyty Brenhinol Morgannwg.

Os caiff y cynlluniau eu cymeradwyo, byddai Macmillan yn cyfrannu £5m tuag at yr uned, sef ei chyfraniad unigol mwyaf yng Nghymru.

Byddai’r uned arbenigol yn cynnwys 8 gwely ac yn darparu gofal i gleifion mewnol a chleifion allanol a gofal lliniarol yn ystod y dydd a chymorth i bobl â chanser na ellir ei wella a chyflyrau eraill.

Ar hyn o bryd, darperir gofal lliniarol i gleifion canser yn y Rhondda yn ysbyty bach lleol Pontypridd, sef y Bwthyn.

Er ei bod yn hysbys bod ansawdd gofal y Bwthyn yn rhagorol, mae ei leoliad weithiau’n golygu bod angen symud cleifion o Ysbyty Brenhinol Morgannwg i gael profion a thriniaethau arbenigol, a gall hynny fod yn anodd a pheri trallod i’r cleifion.

Yn yr un modd, gall rhai cleifion sy’n mynd i Ysbyty Brenhinol Morgannwg gael budd o fod mewn amgylchedd gofal lliniarol, ond nid ydynt yn ddigon iach i’w symud i’r Bwthyn.

Dywedodd Dr Ian Beck, Ymgynghorydd Meddygol ym maes Meddygaeth Liniarol ym Mwrdd Iechyd Prifysgol Cwm Taf: “Byddai uned arbenigol newydd o’r radd flaenaf yn rhoi gofal o’r safon uchaf posibl i gleifion mewn amgylchedd sy’n gyfforddus iddyn nhw a’u teuluoedd.

“Bydd adeiladu’r uned newydd yn Ysbyty Brenhinol Morgannwg hefyd yn sicrhau bod cleifion yn gallu cael profion a thriniaeth arbenigol yn haws heb orfod symud yn ddiangen rhwng ysbytai pan nad ydynt, yn aml, yn ddigon iach i wneud hynny.”

Dywedodd Susan Morris, Pennaeth Gwasanaethau Cymorth Canser Macmillan yng Nghymru: “Mae’n bleser gennym weithio gyda Bwrdd Iechyd Prifysgol Cwm Taf ar yr uned arfaethedig hon, a chredwn y bydd yn helpu pobl i gael gofal lliniarol yn haws mewn amgylchedd cyfforddus.

“Ar ôl ymgynghori’n helaeth â staff a chleifion, byddai’r uned yn cael ei dylunio gan ddefnyddio arbenigedd a dealltwriaeth Macmillan o anghenion pobl sydd â chanser a’u teuluoedd, gan gynnwys ceginau ac ardaloedd cymunedol lle y gallant dreulio amser gyda’i gilydd.

“Os caiff y cynlluniau eu cymeradwyo, dyma fydd buddsoddiad unigol mwyaf Macmillan yng Nghymru, a dim ond drwy haelioni a chymorth y cyhoedd y gallwn gyllido’r cynlluniau hyn.”

Dywedodd John Palmer, Cyfarwyddwr Gwasanaethau Sylfaenol, Cymunedol ac Iechyd Meddwl ym Mwrdd Iechyd Prifysgol Cwm Taf: “Rydym yn ymrwymedig i feithrin ein perthynas wych â Chymorth Canser Macmillan. Y nod yw y bydd yr uned hon o’r radd flaenaf yn ategu ein gwasanaeth gofal lliniarol sy’n datblygu’n gyflym.”

Os caiff y cynlluniau eu cymeradwyo, disgwylir i’r gwaith ddechrau yn hwyrach eleni, a bydd y ganolfan yn agor gobeithio ddiwedd 2018 neu ddechrau 2019.

Taking Cancer Services Health and Well-being advice to into the community

Michelle Lloyd, is the Macmillan Person Centred Care Project Manager with Cwm Taf University Health Board. In her blog, Michelle writes about the importance of holding health and wellbeing events out of the clinical setting and in the community.

We often talk about the importance of delivering care closer to home (where appropriate to do so!). I think the same is true about how we engage with our local community – we need to be out there providing advice and support in ways which are easy for our community to access. So where better a place to go than the Tonyrefail Workingmen’s Club in Porth?

 

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Michelle Lloyd

On Friday 4 November, the Workingmen’s Club proved to be an ideal venue for us to meet with our cancer patients, their relatives and carers. The aim of the event was to provide health and well-being advice to people living with cancer and ensure that they are receiving the best possible care according to their needs.

During the three hours we spent there, we managed to speak with patients, relatives and carers, providing much needed signposting to information and other support networks. In total, 46 people signed in to the event and for some, it was a great opportunity to find out about things like the National Exercise Referral Scheme or the Macmillan Activity Programme.

The overwhelming feedback from the day was simple. As one patient said, the important thing to them was “to be able to talk to someone and have advice”.

It is important that people feel well supported and are provided with good levels of information. It ensures that patients have what they need to make informed decisions about their care and to help them to become more able to self-manage their conditions.

All in all, it was a really beneficial event which allowed cancer patients to not only talk to health care professionals but to also spend time talking with other patients and their families about their own experiences.

We’ll certainly be doing more of these events in the future!

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In the meantime, if you know anyone who wants someone to talk to about cancer, then call Macmillan Cancer Support free on 0808 808 00 00 or visit macmillan.org.uk

Mynd â Chyngor Iechyd a Lles Gwasanaethau Canser i’r gymuned

Michelle Lloyd yw Rheolwr Prosiect Gofal sy’n Canolbwyntio ar yr Unigolyn Macmillan gyda  Bwrdd Iechyd Prifysgol Cwm Taf. Yn ei blog, mae Michelle yn ysgrifennu am bwysigrwydd cynnal digwyddiadau iechyd a lles y tu allan i’r lleoliad clinigol ac yn y gymuned.

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Michelle Lloyd

Rydyn yn aml yn sôn am bwysigrwydd cyflwyno gofal yn nes at y cartref (lle mae’n briodol gwneud hynny!). Rwy’n credu bod yr un peth yn wir am sut rydym yn ymgysylltu â’n cymuned leol – mae angen inni fod allan yno’n cynnig cymorth a chefnogaeth mewn ffyrdd sy’n hawdd i’n cymuned gael mynediad atynt. Felly, does unman gwell i fynd na Chlwb Gweithwyr Tonyrefail yn y Porth.

Ddydd Gwener, 4 Tachwedd, bu’r Clwb Gweithwyr yn lleoliad delfrydol inni gwrdd â’n cleifion canser, â’u perthnasau ac â’u gofalwyr. Nod  y digwyddiad oedd cynnig cyngor iechyd a lles i rai sy’n byw gyda chanser a sicrhau eu bod yn cael y gofal gorau posibl yn ôl eu hanghenion.

Yn ystod y tair awr a dreulion ni yno, llwyddon ni i siarad â chleifion, perthnasau a gofalwyr, gan gyfeirio llawer at wybodaeth ac at rwydweithiau cefnogi eraill. At ei gilydd, cofrestrodd 46 o bobl ar y digwyddiad ac i rai, roedd yn gyfle gwych i gael gwybod am bethau fel y Cynllun Cyfeirio i Ymarfer Cenedlaethol neu Raglen Gweithgareddau Macmillan.

Roedd yr adborth cyffredinol o’r diwrnod yn syml. Fel y dywedodd un claf, y peth pwysig iddo oedd “gallu siarad â rhywun a chael cyngor”.

Mae’n bwysig fod pobl yn teimlo eu bod yn cael cefnogaeth dda a’u bod yn cael digon o wybodaeth. Mae’n sicrhau bod gan gleifion yr hyn sydd ei angen arnyn nhw i wneud penderfyniadau gwybodus am eu gofal ac i’w helpu i allu rheoli eu cyflyrau eu hunain yn well.

At ei gilydd, roedd yn ddigwyddiad buddiol dros ben a alluogodd cleifion canser nid yn unig i siarad â gweithwyr proffesiynol gofal iechyd ond hefyd i dreulio amser yn siarad â chleifion eraill a’u teuluoedd am eu profiadau nhw eu hunain.

Byddwn ni’n sicr yn gwneud rhagor o’r digwyddiadau hyn yn y dyfodol!

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Yn y cyfamser, os ydych chi’n adnabod unrhyw un sydd eisiau rhywun i siarad ag ef/hi am ganser, yna ffoniwch Cymorth Canser Macmillan am ddim ar 0808 808 00 00  neu ewch i macmillan.org.uk

 

Neutropinic Sepsis awareness – why we created an All-Wales chomotherapy clert card

Abby Stevens is Macmillan Chemotherapy and Acute Oncology Project Support Officer and part of the team behind the Chemotherapy Alert Card. Here Abby tells about the need for this card and the difference that they hope that this card will mean to the lives of cancer patients who are undergoing chemotherapy.

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Abby Stevens and Rosie Roberts

There are two main reasons why project manager, Rosie Roberts (a Chemotherapy Specialist Nurse at Velindre Cancer Centre by background) and I developed the All-Wales Chemotherapy Alert Card.

  1. Firstly to ensure that all cancer patients across Wales who are undergoing chemotherapy receive clear and consistent advice.
  2.  To raise awareness that patients undergoing chemotherapy are at a high risk for developing severe side effects including Neutropenic Sepsis and how to manage this.

Neutropenic Sepsis – a common side effect of chemotherapy

Neutropenic Sepsis is a life threatening reaction to infection and is a common side effect of chemotherapy – however it can be treated if caught early enough.

Therefore it’s vital for patients and Health Care professionals to be aware of the symptoms and the importance of acting quickly.

Chemotherapy Alert CardDesigning the card

Having looked at how written information was given to patients across Wales it was found that whilst all patients received written information on the side effects from chemotherapy some patients would only receive information in a large booklet – which would often sit on a shelf untouched, others a sheet of paper that could be easily lost. Some patients already received a card that they could carry with them. The feedback we received from patients was that these portable cards were useful and well utilised.

We wanted to make sure that all patients had access to clear and concise information which could be kept close to hand.

It was also important for us to have something that would allow patients to easily identify themselves to Health Care Professionals as undergoing chemotherapy, and provide management guidance to these professionals.

An all-Wales approach

We produced the AllWales Alert Card in consultation with each Health Board and Velindre NHS Trust to ensure that this card represented the needs of their patients and Health Care Professionals.

We’ve received agreement from across Wales that all patients who receive chemotherapy within Wales will be given this alert card.

Counteracting information overload

Patients receive a lot of information before starting their treatment and it’s often hard to keep track of everything. The Alert card does not replace the full verbal explanation that patients receive but is a handy portable reminder. This credit card sized alert card is something they should carry with them at all times and provides a reminder of key symptoms they should be looking out for and also the 24 hour contact number for them to access specialist advice and information should they become unwell.

The card also provides key information to Health Care Professionals on the management of these patients and the importance of acting quickly. The contact telephone numbers on the card can be used by Health Care Professionals– and local Acute Oncology Services (AOS) are also available 9-5 Monday -Friday to provide support and guidance.

The card is bilingual to ensure one standardised card for Wales which we hope will become instantly recognisable to Health Care Professionals irrespective of location. If a patient who is receiving chemotherapy in Swansea is on holiday in Wrexham by presenting this card when they attend hospital they will be easily identified as a chemotherapy patient and started on the right management pathway.

 

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Ymwybyddiaeth o Sepsis Niwtropenig – Pam yr ydym wedi creu Cerdyn Rhybudd Cemotherapi Cymru Gyfan

Abby Stevens yw Swyddog Cymorth Prosiect Cemotherapi ac Oncoleg Aciwt Macmillan ac mae’n aelod o’r tîm sy’n gyfrifol am y Cerdyn Rhybudd Cemotherapi.  Yma, mae Abby yn sôn am yr angen am y cerdyn hwn a’r gwahaniaeth maent yn gobeithio bydd y cerdyn hwn yn gwneud i fywydau cleifion canser sy’n cael cemotherapi.

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Abby Stevens a Rosie Roberts

Mae dau brif reswm pam fod y Rheolwr Prosiect, Rosie Roberts (Nyrs Arbenigol Cemotherapi yng Nghanolfan Ganser Felindre) a minnau wedi datblygu Cerdyn Rhybudd Cemotherapi Cymru Gyfan.

1) Yn gyntaf, i sicrhau bod cleifion canser ar draws Cymru, sy’n cael cemotherapi, yn derbyn cyngor clir a chyson.
2)  I godi ymwybyddiaeth bod cleifion sy’n cael cemotherapi yn wynebu risg uchel o ddatblygu sgȋl-effeithiau difrifol, gan gynnwys Sepsis Niwtropenig, a sut i reoli hyn.

 

Sepsis Niwtropenig – Sgȋl-effaith cyffredin cemotherapi

Mae Sepsis Niwtropenig yn adwaith i haint sy’n bygwth bywyd ac mae’n sgȋl-effaith cyffredin cemotherapi – fodd bynnag, gellir ei drin os caiff ei ddal yn ddigon cynnar.

Felly, mae’n hanfodol bod cleifion a Gweithwyr Gofal Iechyd Proffesiynol yn ymwybodol o’r symptomau a phwysigrwydd gweithredu’n gyflym.  final-all-wales-alert-card-13-05-16-2

 

Dylunio’r cerdyn

Wedi edrych ar sut oedd gwybodaeth ysgrifenedig yn cael ei roddi i gleifion ar draws Cymru, fe ddarganfuwyd, er bod pob claf yn derbyn gwybodaeth ysgrifenedig ar sgȋl-effeithiau cemotherapi, byddai rhai cleifion yn derbyn gwybodaeth mewn llyfryn mawr yn unig – a fyddai’n aml yn eistedd ar silff heb ei gyffwrdd, ac fe fyddai cleifion eraill yn derbyn darn o bapur sy’n hawdd ei golli.  Roedd rhai cleifion eisoes wedi derbyn cerdyn i’w gario gyda nhw.  Yr atborth a gawsom gan gleifion oedd bod y cardiau cludadwy yma’n ddefnyddiol iawn.

Roeddem ni eisiau sicrhau bod gan bob claf fynediad at wybodaeth glir a chryno, a ellir ei gadw wrth law.

Roedd yn bwysig hefyd i ni gael rhywbeth a fyddai’n galluogi cleifion i ddweud yn hawdd wrth Weithwyr Gofal Iechyd Proffesiynol eu bod yn cael cemotherapi, a rhoi canllawiau rheoli i’r Gweithwyr Proffesiynol yma.

Ymagwedd Cymru Gyfan

Fe wnaethom baratoi’r Cerdyn Rhybudd Cymru Gyfan mewn ymgynghoriad â phob Bwrdd Iechyd ac Ymddiriedolaeth GIG Felindre, er mwyn sicrhau bod y cerdyn yn cynrychioli anghenion eu cleifion a Gweithwyr Gofal Iechyd Proffesiynol.

Rydym wedi derbyn cytundeb o bob cwr o Gymru y bydd pob claf sy’n cael cemotherapi yng Nghymru yn derbyn y Cerdyn Rhybudd hwn.

Rhwystro gormod o wybodaeth

Mae cleifion yn derbyn llawer o wybodaeth cyn cychwyn ar eu triniaeth ac, yn aml, mae’n anodd cadw cyfrif o bopeth.  Nid yw’r Cerdyn Rhybudd yn cymryd lle’r esboniad llafar llawn mae cleifion yn ei gael, ond mae’n atgof cludadwy defnyddiol.  Mae’r Cerdyn Rhybudd maint cerdyn credyd, yn beth y dylent gadw gyda nhw bob amser ac mae’n atgof o’r symptomau allweddol y dylent fod yn cadw llygad amdanynt, ac arno hefyd mae rhif cyswllt 24 awr iddynt i gaffael cyngor a gwybodaeth arbenigol, os ydyn nhw’n teimlo’n sâl.

Yn ogystal, mae’r cerdyn yn rhoi gwybodaeth allweddol i Weithwyr Gofal Iechyd Proffesiynol ar reoli’r cleifion yma a phwysigrwydd gweithredu’n gyflym.  Gall Gweithwyr Gofal Iechyd Proffesiynol ddefnyddio’r rhifau cyswllt ar y cerdyn – ac mae Gwasanaethau Oncoleg Aciwt (AOS) lleol ar gael hefyd rhwng 9-5 dydd Llun – dydd Gwener, i roi cymorth a chyfarwyddyd.

Mae’r cerdyn yn ddwyieithog, er mwyn sicrhau un cerdyn safonol i Gymru, ac yr ydym yn gobeithio bydd yn dod yn hawdd ei adnabod i Weithwyr Gofal Iechyd Proffesiynol, ym mhob lleoliad.  Os fydd claf sy’n cael cemotherapi yn Abertawe ar wyliau yn Wrecsam, trwy gyflwyno’r cerdyn hwn pan fydd yn mynychu’r ysbyty, fe fydd yn cael ei adnabod yn hawdd fel claf cemotherapi ac fe fydd yn cael ei roi ar y llwybr rheoli cywir yn syth.

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Patient experience: the power of story

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Carol Davies is a Macmillan Lung Cancer Nurse Specialist at Nevill Hall Hospital in Abergavenny. In 2015 she successfully submitted to, and presented at, the prestigious World Lung Cancer Conference in Denver, Colorado. Carol’s pictorial presentation told the story of her patient Norman and the physical and psychological burden that cancer had on Norman and his family’s life. Carol told Norman’s story very powerfully – making even the most hardened professionals in the audience blink back tears.

What are the aims of your current role?

I support lung cancer and mesothelioma patients from initial presentation throughout the duration of their disease.

What led you to submit some of your work to the World Lung Cancer Conference and how did you get to Colorado?

I decided last year to submit two pieces of work which I thought would be useful for lung cancer colleagues around the world to the 16th World Conference on Lung Cancer in Denver, USA.

I felt this would be a way to share learning with international colleagues. It was also a really good opportunity to showcase the work we are doing in Wales.

Tell us more about these two pieces of work

I had an opportunity to be involved with the interview and video telling a patient’s story entirely from their viewpoint. My colleague Naomi and I are Macmillan nurses; so we approached Macmillan for advice about how to go about making the video.

I arranged to meet Norman and his wife, Lynne, to find out what was important to him and what he wanted to say before we made the video itself.

Norman had some very powerful insights and had specific points he wanted to get across and knew exactly what he wanted to say.

What Norman said during the interview was entirely his take on what had happened and how it affected him. It was really moving, especially as Norman opened his story with: “Hello, I am Norman. I am 68-years young and I am dying from mesothelioma.”

He spoke of his shock at his diagnosis and his anger. He had contracted the mesothelioma from his work as an engineer, which exposed him to asbestos.

Norman’s felt his diagnosis had been delayed with opportunities missed. He emphasised that patients should be asked at initial presentation about asbestos exposure.

He spoke about wanting to join a support group but there wasn’t any in Wales specifically for his condition. Norman understood why, because with this type of cancer there is no cure and most patients do not survive long.

He described eloquently the physical and psychological burden of this disease and the impact it had on his and his family’s life.

The video has been used as an educational tool for healthcare professionals.

The second piece of work was a breathlessness leaflet for patients. This was inspired by our lung cancer patients saying there was a lot of information about this symptom. The problem they identified was that they did not feel as though they were able to wade through it all; they asked for something straightforward to help them cope with this complex symptom.

What happened after you submitted the two pieces?

CAROL DAVIES, ABERGAVENNY, 21/03/2016

The breathlessness poster was accepted. To my surprise, shock and initial horror, the patient story was accepted for an oral poster presentation.

Initially  I thought “I can’t do this!”  But then I thought about Norman – this was his legacy, and it deserved to be heard.

The fact that it was Norman’s story really helped me prepare the presentation.  I spent a lot of time thinking about how to do his story justice.

I decided to use a very pictorial presentation to help me get across Norman’s key points and support it verbally with his own words.

How did the presentation go and what do you think they learned?

The presentation went well and was well received. I had to send a copy of the presentation before the conference and the pre-presentation feedback was that my slides were very picture focused.

However, when I delivered the presentation, it had a powerful impact.

I used a picture of Father Christmas to explain in Norman’s words why he decided to postpone his December chemotherapy. He knew this may well be his last Christmas; if it was, he wanted it enjoy it.

He said he understood how a person on death row felt, as he had a death sentence and was living it…. Then he would be gone.

I was told by a lung cancer specialist nurse colleague that hardened professionals in the audience were blinking back tears during the presentation.

I also received other really positive feedback about how powerful and moving the presentation was. I know how proud Norman would be that his story has been told.

The telling of a patient story is a very powerful tool that we all can learn from. Healthcare professionals need to hear what the patients’ experience of the cancer pathway is, and the impact it has on their lives so that we can optimise care.

If you have any questions about cancer talk to our Support Line on 0808 808 0000 (open Monday to Friday 9am to 8pm) or visit our website www.macmillan.org.uk for information and support.

 

 

Profiad claf: grym stori

Nyrs Glinigol Arbenigol Macmillan mewn Canser yr Ysgyfaint yw Carol Davies sy’n gweithio yn ysbyty Nevill Hall, y Fenni. Yn 2015 llwyddodd i gyflwyno cais, a gafodd ei dderbyn, i roi cyflwyniad gerbron Cynhadledd Canser yr Ysgyfaint y Byd yn Denver, Colorado. Adroddodd cyflwyniad lluniau Carol hanes ei chlaf, Norman, a’r baich corfforol a seicolegol roedd canser wedi’i roi ar fywyd Norman a’i deulu. Adroddodd Carol stori Norman mewn ffordd rymus iawn – gan wneud i hyd yn oed y gweithwyr proffesiynol mwyaf calongadarn orfod dal eu dagrau yn ôl.

CAROL DAVIES, ABERGAVENNY, 21/03/2016

Beth yw nodau eich rôl bresennol?

Rwy’n cefnogi cleifion canser yr ysgyfaint a mesothelioma o’r adeg maen nhw’n ymddangos i’r gwasanaeth iechyd gyntaf a thrwy gydol eu clefyd.

Beth sbardunodd chi i gyflwyno peth o’ch gwaith i Gynhadledd Canser yr Ysgyfaint y Byd a sut gyrhaeddoch chi Colorado?

Y llynedd, penderfynais gyflwyno dau ddarn o waith a fyddai, yn fy nhyb i, yn ddefnyddiol i gydweithwyr canser yr ysgyfaint o amgylch y byd, a hynny i ymddangos gerbron 16eg Gynhadledd y Byd ar Ganser yr Ysgyfaint yn Denver, Unol Daleithiau America.

Roeddwn yn teimlo y byddai hyn yn ffordd o rannu dysgu gyda chydweithwyr rhyngwladol. Roedd hefyd yn gyfle gwych i arddangos y gwaith rydyn ni’n ei wneud yng Nghymru.

Dywedwch fwy wrthyn ni am y ddau ddarn yma o waith

Ces i gyfle i gymryd rhan yn y cyfweliad a’r fideo i adrodd hanes claf drwy eu llygaid nhw yn unig. Mae fy nghydweithwraig Naomi a finnau’n nyrsys Macmillan; felly holon ni Macmillan am gyngor ynghylch sut i fynd ati i wneud y fideo.

Trefnais i gwrdd â Norman a’i wraig, Lynne, i glywed beth oedd yn bwysig iddo fe a beth roedd e am ei ddweud cyn i ni wneud y fideo ei hun.

Roedd gan Norman rai mewnwelediadau grymus iawn ac roedd ganddo bwyntiau penodol roedd e am eu cyfleu; roedd yn gwybod yn union beth oedd ganddo i’w ddweud.

Yr hyn a ddywedodd Norman yn ystod y cyfweliad oedd union ei safbwynt ef am yr hyn oedd wedi digwydd a sut roedd wedi effeithio arno fe. Roedd yn sobreiddiol iawn, yn arbennig am fod Norman wedi dechrau ei stori gyda’r geiriau: “Helo, Norman yw i. Rwy’n ddyn ifanc 68 oed ac rwy’n marw o fesothelioma.”

Soniodd am ei sioc wrth gael ei ddiagnosis a’i ddicter. Drwy ei waith fel peiriannwr, a oedd wedi golygu ei amlygu i asbestos, yr oedd wedi datblygu mesothelioma.

Roedd Norman yn teimlo bod oedi wedi bod yn ei ddiagnosis a bod cyfleoedd wedi’u colli. Pwysleisiodd y dylid gofyn i gleifion y tro cyntaf maen nhw’n ymddangos i’r meddyg am amlygiad i asbestos.

Soniodd am ei ddymuniad i ymuno â grŵp cymorth ond doedd dim un yng Nghymru yn benodol ar gyfer ei glefyd ef. Roedd Norman yn deall pam; oherwydd nad oes unrhyw ffordd o wella’r math hwn o ganser ac nid yw’r rhan fwyaf o gleifion yn goroesi’n hir.

Disgrifiodd yn huawdl iawn faich corfforol a seicolegol y clefyd hwn a’r effaith roedd yn ei chael ar ei fywyd ef a bywyd ei deulu.

Mae’r fideo wedi’i ddefnyddio fel teclyn addysgol ar gyfer gweithwyr proffesiynol gofal iechyd.

Taflen ar ddiffyg anadl i gleifion oedd yr ail ddarn o waith. Ysbrydolwyd hyn gan ein cleifion canser yr ysgyfaint, a oedd yn dweud bod llawer o wybodaeth am y symptom hwn. Y broblem a nodwyd ganddyn nhw oedd eu bod yn teimlo nad oedden nhw’n gallu palu drwyddi; gofynnon nhw am rywbeth symlach i’w helpu i ymdopi gyda’r symptom cymhleth hwn.

Beth ddigwyddodd ar ôl i chi gyflwyno’r ddau ddarn?

Derbyniwyd y poster ar ddiffyg anadl. Er mawr syndod a sioc i mi i ddechrau, derbyniwyd stori’r claf fel testun cyflwyniad poster llafar.

I ddechrau, roeddwn i’n meddwl, “Alla i ddim gwneud hyn!”  Ond wedyn meddyliais am Norman – dyma oedd ei waddol, ac roedd yn stori oedd yn haeddu cael ei chlywed.

Roedd y ffaith mai stori Norman oedd hi wedi fy helpu’n fawr iawn wrth baratoi’r cyflwyniad. Treuliais gryn amser yn meddwl am y ffordd gallwn wneud cyfiawnder â’r stori.

Penderfynais i ddefnyddio cyflwyniad gyda llawer o luniau i’m helpu i gyfleu pwyntiau allweddol Norman a’u hategu ar lafar gyda’i eiriau ef ei hun.

CAROL DAVIES, ABERGAVENNY, 21/03/2016

Sut aeth y cyflwyniad a beth ddysgon nhw, ydych chi’n meddwl?

Aeth y cyflwyniad yn dda a chafwyd ymateb da iddo fe. Bu’n rhaid i mi anfon copi o’r cyflwyniad cyn y gynhadledd a’r adborth ymlaen llaw oedd bod fy sleidiau’n canolbwyntio i raddau helaeth ar y lluniau.

Fodd bynnag, pan draddodais y cyflwyniad, cafodd effaith bwerus.

Defnyddiais lun o Siôn Corn i esbonio yng ngeiriau Norman pam y penderfynodd ohirio’i gemotherapi yn y mis Rhagfyr. Roedd yn sylweddoli ei bod yn bur debyg mai hwn fyddai ei Nadolig olaf; os dyna oedd y gwir amdani, roedd am ei fwynhau.

Dywedodd ei fod yn deall sut deimlad oedd hi i wynebu rhes yr angau, am fod ganddo ef ddedfryd farwolaeth yn hongian drosto a’i fod yn byw’r ddedfryd honno… yna byddai wedi diflannu.

Dywedwyd wrthyf i gan gydweithiwr sy’n nyrs arbenigol canser yr ysgyfaint fod gweithwyr proffesiynol calongadarn yn y gynulleidfa’n dal eu dagrau yn ôl yn ystod y cyflwyniad.

Ces i adborth arall a oedd yn gadarnhaol iawn hefyd ynghylch pa mor rymus a chynhyrfus oedd y cyflwyniad. Rwy’n gwybod mor falch fyddai Norman fod ei stori wedi’i hadrodd.

Mae adrodd hanes claf yn declyn pwerus iawn ac yn rhywbeth y gallwn ni i gyd ddysgu drwy ei wneud. Mae angen i weithwyr proffesiynol gofal iechyd glywed beth yw profiad cleifion o’r llwybr canser, a’r effaith mae hynny’n ei chael ar eu bywydau, fel y gallwn wneud y gorau o’u gofal.

Yn Macmillan, rydyn ni’n gwybod y gall diagnosis canser effeithio ar bob rhan o’ch bywyd ac rydyn ni yma i roi cymorth ichi. Fe rown ni help ichi gael y cymorth, yr egni a’r ysbrydoliaeth sydd eu hangen arnoch chi, fel y gallwch chi ddechrau teimlo fel chi eich hun unwaith eto. Ffoniwch 0808 808 00 00 neu ymweld â macmillan.org.uk