Download national standards for teenagers and young adults with

NATIONAL STANDARDS FOR TEENAGERS AND YOUNG
ADULTS WITH CANCER AGED 16 – 24 YEARS
1
CONTENTS
INTRODUCTION TO THE NATIONAL CANCER STANDARDS ...................................................... 3
PURPOSE OF STANDARDS ............................................................................................................. 4
METHODOLOGY ................................................................................................................................ 4
FORMAT ............................................................................................................................................. 4
EPIDEMIOLOGY OF CANCER IN TEENAGERS AND YOUNG ADULTS ....................................... 6
INCIDENCE ..................................................................................................................................... 6
MORTALITY .................................................................................................................................... 7
SURVIVAL TRENDS ....................................................................................................................... 8
TOPIC: ORGANISATION ................................................................................................................... 9
OBJECTIVE 1: TO STRUCTURE CANCER NETWORKS SUCH THAT THEY BRING
TOGETHER KEY STAKEHOLDERS IN BOTH PLANNING AND PROVIDING CANCER CARE
WITHIN AN OPEN, TRANSPARENT MANAGEMENT STRUCTURE. ....................................... 9
OBJECTIVE 2: CARE PROVIDED BY TEAMS SHOULD BE WELL CO-ORDINATED TO
PROVIDE AN EFFICIENT, EFFECTIVE SERVICE TO PATIENTS ......................................... 14
TOPIC: PATIENT-CENTERED CARE .............................................................................................. 19
OBJECTIVE 3: TO ENSURE THAT PATIENTS AND OR THEIR CARERS HAVE SUPPORT
AND ALL THE INFORMATION THEY REQUIRE REGARDING THE DIAGNOSIS, TREATMENT
OPTIONS AND TREATMENT CARE PLAN. ............................................................................ 19
TOPIC: MULTIDISCIPLINARY TEAM .............................................................................................. 24
OBJECTIVE 4: TO ENSURE THAT CANCER CARE FOR YOUNG PEOPLE IS PROVIDED BY A
SPECIALIST MULTIDISCIPLINARY TEAM .............................................................................. 24
TOPIC: INITIAL REFERRAL AND TIMES TO TREATMENT ........................................................... 29
OBJECTIVE 5: TEENAGERS AND YOUNG ADULTS WITH CANCER SHOULD BE REFERRED,
DIAGNOSED AND TREATED IN A TIMELY AND APPROPRIATE FASHION ........................ 29
OBJECTIVE 6: TEENAGERS AND YOUNG ADULTS WITH CANCER SHOULD BE
DIAGNOSED, STAGED AND TREATED PROMPTLY AND IN-LINE WITH BEST PRACTICE
GUIDELINES ............................................................................................................................. 33
OBJECTIVE 7: TO ENSURE THAT ALL TEENAGERS AND YOUNG ADULTS RECEIVE
ADEQUATE ASSESSMENT OF, AND PROVISION FOR, PALLIATIVE CARE NEEDS AT ALL
TIMES AND IN EVERY SETTING. THIS INCLUDES CARE OF DYING PATIENTS, THEIR
FAMILIES AND CARERS .......................................................................................................... 36
APPENDICES ................................................................................................................................... 38
APPENDIX 1 – The Children and Young People‟s Specialised Services Project ............................ 38
APPENDIX 2 – Membership of the Standards Working Group ........................................................ 40
APPENDIX 3 - The Role of the Key Worker (Table 7 NICE Improving Outcomes for Children and
Young People with Cancer) .............................................................................................................. 41
APPENDIX 4 – Glossary Acronyms .................................................................................................. 42
2
INTRODUCTION TO THE NATIONAL CANCER STANDARDS
These cancer standards are based on the National Institute for Health and Clinical
Excellence (NICE) service guidance for Children and Young People with Cancer
published in 20051. The standards have been developed to provide a foundation for
the NHS in Wales to plan and deliver effective high quality services for older
teenagers and young adults (TYA) with cancer aged 16 to 24 years inclusive.
Standards for children aged 0 up to and including 15 years of age have also been
published2.
Cancers in young people are rare. Historically, cancers in teenagers aged 16 to 18
have been managed by experts in paediatric cancers or other adult cancer site
specific teams. In the NICE Service Guidance for Children and Young People with
Cancer3 there is recognition that there are biological and epidemiological differences
in the cancers that occur in teenagers and young adults compared to those occurring
in adults or children and there may also be different psychological and social needs
in these patients.
The key underpinning principle to the NICE service guidance, reflected in these
standards, is to provide care „safely as locally as possible, not locally as safely as
possible‟. Teenagers and young adults should be offered treatment in dedicated age
appropriate facilities with the support of other patients of similar age. In future, these
facilities will be provided in a Principle Treatment Centre (PTC). This may mean
travelling significant distances but clinicians should not assume that patients will not
wish to travel and should offer patients choice on the place of care.
The significant contribution of a number of charities that have specialised in
supporting teenagers and young people with cancer and their families is fully
acknowledged. This partnership with the NHS has resulted in additional
appointments of key staff and facilities that have improved the quality of care
available, whether that be at home, in a TYA designated hospital or within a PTC.
Standards for imaging, pathology and treatment modalities are detailed in the
cancer-site specific National Cancer Standards (2005) for services to adult patients2.
In common with these previous publications, there are a number of generic
standards which Local Health Boards (LHBs) are responsible for, but are wider than
one organisation‟s remit. These would most efficiently and practically be
1
National Institute for Health and Clinical Excellence (2005) Cancer Service Guidance: Improving Outcomes in
Children and Young People with Cancer – The Manual.
London: NICE. Available from www.nice.org.uk
2
3
http://wales.gov.uk/topics/health/publications/health/guidance/nationalstandardscancer?lang=en
National Institute for Health and Clinical Excellence (2005) Cancer Service Guidance: Improving Outcomes in
Children and Young People with Cancer – The Manual.
London: NICE. Available from www.nice.org.uk
3
implemented by Cancer Networks on behalf of their constituent statutory
organisations.
PURPOSE OF STANDARDS
Implementation of these standards will ensure access to high quality cancer services
for teenagers and young adults across Wales. The standards require participation in
national clinical audit which is the basis of benchmarking current services and
informs the development of robust future services to meet the specialised health
needs of young people. Current cancer services for teenagers and young adults will
already be compliant with a number of these standards however some services will
need to change to reach the required standard of care. On publication, the Welsh
Government will indicate to Local Health Boards when full compliance to the
standards will be required.
METHODOLOGY
Standards for Children and Young People were initially developed by the Children
and Young People‟s Specialised Services Project. This work is summarised in
Appendix 1.
As a result of the NICE Improving Outcomes Guidance1, the Cancer National
Specialist Advisory Group (Cancer NSAG) was tasked with developing draft
standards as part of the Welsh Government‟s series of National Cancer Standards
first issued in 2005. To take this forward the Cancer NSAG set up an advisory group
of specialists involved in the treatment of teenagers and young adults with cancer
(Appendix 2). The Lead Clinician of the NICE Service Guidance Development Group
was also a member of the Cancer NSAG TYA advisory group, and the Cancer
NSAG and their clinical advisers have worked closely with the Department of Health
clinical advisory group to ensure that the same level of specialisation is developed in
both Wales and England. This is important both for those patients who have to travel
across the border to receive their treatment and for the sustainability of services
provided in Wales. The National Standards for Teenagers and Young Adults with
Cancer should be read alongside the other requirements for children published by
the Children and Young People‟s Specialised Services Project 4.
FORMAT
These standards are in many cases highly technical with the key audiences being
clinical teams that provide the required services and service planners. A summary
version will also be made available specifically for parents/carers of teenagers and
young adults with cancer. This will be developed with input from families and will be
accessible alongside the standards technical document via the internet.
4
CYPSS www.wales.nhs.uk/cypss
4
The standards are presented as a series of Topics.
These address the
organisational requirements that are key to effective delivery of care and then follow
the main stages in the patient journey. Within each Topic, a Rationale is presented
that provides the context to the specific standards that follow.
Attached to each standard are examples of monitoring criteria. These examples are
indicative of the monitoring that will be required. Performance against the standards
needs to be based on robust evidence. To achieve this monitoring of compliance
uses information on key aspects of service provision collated over a year rather than
at a single time point. A separate comprehensive on-line monitoring tool is being
developed and will be made available to LHBs to allow uniform self-assessment.
5
EPIDEMIOLOGY OF CANCER IN TEENAGERS AND YOUNG ADULTS
INCIDENCE
Figure 1 shows the incidence of cancers occurring in teenagers and young adults
aged 16 to 24 years over the 15 year period 1995 to 20091. Overall the numbers of
cancer diagnoses per year are small. Such small numbers result in large variation in
incidence rates year on year. Of the 1196 cancer patients registered during this time
period, approximately 40% were diagnosed with either a leukaemia, lymphoma, or a
cancer of the central nervous system. Gonadal and germ cell cancers along with
carcinoma and melanoma account for nearly half of all teenage and young adult
cancers in Wales. Each of the remaining cancer types individually account for less
than 5% of the total.
A young age of onset of cancer is one of the hallmarks of familial cancer syndrome
and therefore, some consideration of a possible predisposition is important in these
cases.
Figure 1 Cancer Incidence for teenagers and young adults in Wales (16-24),
1995-2009
2.2%
Leukaemia
Lymphoma
9.4%
Central Nervous System
Sympathetic Nervous System 0.4%
25.3%
20.4%
Retinoblastoma 0.0%
Kindey Tumours 0.4%
Liver 0.7%
Bone
10.0%
22.7%
Soft Tissue Sarcomas
Gonadal and Germ Cell
4.3%
4.1%
Carcinoma & Melanoma
Other Unspecified
6
MORTALITY
WCISU report that approximately 20% of patients diagnosed with cancer during the
time period 1995 to 2009 had died by December 2010. Mortality for patients with
leukaemia, lymphoma and CNS accounts for nearly half of the deaths.. The data on
mortality are summarised in Figure 2.
Figure 2 Cancer Mortality for teenagers and young adults (16- 24) in Wales,
1995-2009
1.1%
Leukaemia
Lymphoma
13.4%
Central Nervous System
22.3%
Sympathetic Nervous System 1.1%
12.3%
Retinoblastoma 0.0%
Kindey Tumours
1.1%
Liver 1.6%
7.8%
Bone
21.2%
9.3%
Soft Tissue Sarcomas
Gonadal and Germ Cell
8.6%
Carcinoma & Melanoma
Other Unspecified
7
SURVIVAL TRENDS
Comparison of survival data over the two 5 year time periods 1995 to 1999 and 2000
to 2004 show that there has been an improvement in 5 year relative survival for
leukaemia (Figure 3). For teenagers and young adults diagnosed with leukaemia
survival has increased but does not reach statistical significance. Relative survival in
lymphoma is higher than that observed in leukaemia but shows a slight decrease
over the two time cohorts – this is due to the very small numbers involved resulting in
large confidence intervals. Survival following cancers of the central nervous system
was observed to decrease over the two time periods but, as with leukaemia and
lymphoma these changes are not statistically significant.
Figure 3 Five year relative survival for teenagers and young adults in Wales,
1995-2004
8
TOPIC: ORGANISATION
OBJECTIVE 1: TO STRUCTURE CANCER NETWORKS SUCH THAT THEY
BRING TOGETHER KEY STAKEHOLDERS IN BOTH PLANNING AND
PROVIDING CANCER CARE WITHIN AN OPEN, TRANSPARENT
MANAGEMENT STRUCTURE.
RATIONALE: The needs of teenagers and young adults differ from those of
children and the rest of the adult population, mainly in relation to the specific
needs of individuals moving through the transition into adulthood. As cancers
in this age group are rare, patients can feel isolated from their peers. The
requirement for care to be provided in an age appropriate environment with a
support network addresses these needs.
The Cancer Network is an organisational association between primary,
secondary, tertiary and voluntary services with care delivered by
multidisciplinary clinical teams within a geographic area. Regular meetings
between planners and providers as stakeholder organisations will facilitate
review of service provision and ensure uniform standards of care are applied
across the Network. Local Health Boards, working together through the
Networks or the Welsh Health Specialised Services Committee as necessary ,
advised by its TYA sub-group will need to consider and agree any
reorganisation of services where appropriate.
Whilst working within the Cancer Network, the Chief Executives of all the
partner organisations involved need to ensure proper governance
arrangements are in place. These arrangements should clearly set out the
roles, responsibilities and accountabilities of the individual organisations and
will include both clinical and non-clinical aspects of governance. Where
Accountable Officer responsibilities overlap then this need to be clearly set out
also.
Where a clinical team provides care to more than one organisation, clear
agreements will be required between organisations about how clinical
governance responsibilities are to be carried out. In relation to team working,
the recommendations made at the team meeting are advisory, and the
responsibility for clinical decisions and actions always rests with the senior
clinician under whose care the patient is at that point of their journey.
There are two Cancer Networks providing services for Teenagers and Young
Adults with cancer living in Wales. Services provided for the North Wales
population will continue to be co-ordinated by the Cancer and Children's
Clinical Programme Groups of Betsi Cadwaladr University Health Board and,
as a result of the service model in place, will also need to maintain formal links
to the North West Region‟s Teenage and Young Adults Cancer Network. The
9
South Wales Cancer Network, that includes Powys, has a population that will
support a Teenage and Young Adult Primary Treatment Centre (TYA PTC)
and already hosts the Children‟s Hospital and a TYA Unit in Cardiff together
with adult cancer services across the network. A TYA PTC would be expected
to contain a single clinical multidisciplinary team (TYA PTC MDT).
When referral of a teenager or young adult is made to an adult cancer site
specific MDT, this cancer site MDT will be responsible for confirming the initial
cancer diagnosis and formulating a treatment plan. This treatment plan must
be confirmed with the TYA PTC MDT.
Because of the rarity of some tumours in this age group and biological
differences between patients, the TYA PTC MDT will advise the cancer site
specific MDT on the appropriate paediatric or adult treatment protocol for
individual patients based on the latest clinical trial where appropriate. When
necessary, it will be important that specialists from the relevant adult cancer
MDT join the core membership in the TYA PTC MDT meetings. The TYA PTC
MDT will maintain a register of all cancers in the 16 to 24 year old age group,
and be responsible for advising on access to age appropriate5 supportive care
not evident in adult services.
The decision about whether care will be provided at the TYA PTC or locally
will depend on the age of the patient and patient choice.
The TYA PTC will be responsible for the transition of young people moving
into adult services. Flexibility will be needed at the age boundaries (16 to 17
and 18+)6 to ensure that decisions about where care is to be provided are
made in the best interests of each patient. Teenagers between the ages of 16
to the end of their 17th year should be treated in the TYA PTC. For patients
aged 18 to 24 years, and involving discussion at the TYA MDT, care may be
provided in the TYA PTC or designated TYA hospitals with specialist outreach
and community nursing services that will form an essential part of keeping
care local or at home.
5
“Age-appropriate” is used throughout this document. An exploration of the definitions of ageappropriate care in this context has been drafted by the department of health and is available on the
CQUINS website: http://www.cquins.nhs.uk/?menu=resources, under the teenagers and young adults
section.
6
These age cohorts align with the Welsh National Service Framework for Children and Young People
(2005)( http://www.wales.nhs.uk/sites3/home.cfm?OrgID=441 but are in contrast to the NICE Children
and Young People with Cancer IOG age cohorts which follow the definitions in the English NSF for
Children, Young People and Maternity (2004)
(http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_40
89101).
10
The Cancer NSAG will continue to support the development of information,
best practice and benchmarking performance via clinical audit with Cancer
Networks across the UK.
11
STANDARD
EXAMPLES OF MONITORING
CRITERIA7
1.1 LHBs working through their
Cancer Networks designate Principal
Treatment Centres for teenagers and
young adults (TYA PTC)8 which
provide dedicated inpatient and daycare facilities. Designation is in
writing, taking account of NICE
guidance with advice from the Cancer
Network‟s TYA subgroup.
1.2 The LHBs working through their
Cancer Networks designate TYA
hospitals that provide care to the level
agreed with the TYA PTC for patients
aged 18 to 24 years. Designation is in
writing, taking account of NICE
guidance with advice from the Cancer
Network‟s TYA subgroup.
1.3 Each Cancer Network has a
named lead clinician with a job
description agreed by the Network
Board.
1.4 Patients aged 16-17 are treated in
the TYA PTC. Those aged 18-24 are
offered the choice to be treated in the
PTC or in a TYA designated hospital
1.5 The Cancer Network
membership, management
arrangements and accountability are
documented. The membership of the
Cancer Network and its TYA
subgroup reflect the multiprofessional and multi-organisational
nature of the service provided to
teenagers and young adults.
Consideration is given to ensuring
that there is appropriate geographical
representation across the network
region and from both TYA PTC and
TYA designated hospitals.
1.1 Documentation to be provided by
LHBs through their Cancer Networks
confirming the designation of the
TYA PTC.
1.2 Documentation to be provided by
the Cancer Networks confirming the
designated TYA hospital/s and
agreed levels of care to be provided.
1.3 Documentation to be provided by
the Cancer Network.
1.4 Clinical Audit
1.5 The establishment agreement
detailing the Cancer Network
membership and management
accountability.
7
These examples are indicative of the monitoring that will be required. A separate comprehensive online monitoring tool is being developed and will be made available to LHBs to allow uniform selfassessment.
8
The TYA PTC for young adults may also be collocated with the PTC for children and should be in the
same city
12
1.6 Clinical governance and
accountability rests with the LHB and
with the consultant responsible for
that patient, however where care is
transferred from one clinical team to
another and/or where the team
provides care in more than one
organisation there is documentation
clearly detailing accountability.
1.7 The LHBs working through their
Cancer Networks produce a Service
Development Plan that is agreed by
the Cancer Network Board and is
updated annually.
1.6 Documentation to be provided
detailing accountability for clinical
governance.
1.7
a. The Service Development
Plan, approved by the LHBs
working through their Cancer
Network Board, is available for
external peer review.
b. The LHBs will report through
their network board on
implementation of the service
development plan.
13
OBJECTIVE 2: CARE PROVIDED BY TEAMS SHOULD BE WELL COORDINATED TO PROVIDE AN EFFICIENT, EFFECTIVE SERVICE TO
PATIENTS
RATIONALE: Cancer care involves a number of different specialists working
together as a team. To effectively work as a team, particularly across
departments within an LHB, co-ordination and clinical leadership are required.
To ensure this level of co-ordination, all cancer patients within the TYA age
group will need to be identified to the TYA PTC MDT as soon as possible and,
if possible, prior to the start of treatment.
The LHB/Trust Cancer Lead Clinician (CLC) is accountable to his/her Board
via the Medical Director or Executive Lead for Cancer and is responsible for
identifying requirements to ensure cancer teams within the LHB/Trust comply
with the cancer standards. The LHB/Trust CLC needs to be supported by the
LHB/Trust senior management team involved in providing cancer services.
The Cancer Network‟s TYA subgroup will advise the CLCs of the LHB/Trust
where services are provided.
LHBs working through the Cancer Network‟s TYA subgroup need to ensure
that a process is in place so that prompt information on new patients with a
diagnosis of cancer within this age-range is passed onto CLCs and the TYA
PTC MDT and that care is managed9 by the appropriate specialist cancer
team. The team will depend on the cancer type and may be the PTC‟s
children‟s cancer MDT, the TYA PTC MDT, a cancer site specific adult cancer
MDT, or a supraregional specialist MDT10.
Teenagers and young adults should be offered the option to be cared for in
the PTC with dedicated age appropriate facilities with the support of other
patients of similar age.
Effective communication between teams regarding services available at all
sites is crucial.
9
„Managed by‟ does not necessarily equate to „delivered by‟
For rarer cancers such as sarcomas, ocular tumours, or liver cancer.
10
14
STANDARD
EXAMPLES OF MONITORING
CRITERIA11
2.1 In each LHB12 there is an
identified Cancer Management Team
that reflects the manner in which
cancer is treated across the
management structures. Each team
includes at a minimum:
a. Cancer Lead Clinician (CLC);
b. a designated Lead Manager;
c. the lead Cancer Co-ordinator;
d. a nominated Executive Lead;
e. a designated Lead Cancer
Nurse.
2.2 The CLC is appointed by the
LHB/Trust and has recognised
dedicated sessional time with
administrative and senior
management support.
2.3 The CLC attends both LHB and
Cancer Network meetings as
appropriate.
2.4 The lead clinician for the TYA
PTC13 is confirmed by LHBs through
their Cancer Network in consultation
with their respective CLC and Medical
Director or Executive Lead of the host
LHB.
2.1 Documentation detailing names
and designation and a description of
how the management team relates to
internal management structures.
2.2 Job plan to detail role, sessional
time and management support for
CLC.
2.3 Detailed in job plan.
2.4 Documentation to be provided by
the Cancer Network
11
These examples are indicative of the monitoring that will be required.. A separate comprehensive online monitoring tool is being developed and will be made available to LHBs to allow uniform selfassessment.
12
And Velindre
13
This person would be considered to be the lead clinician for both the TYA PTC and for the Cancer
Network‟s TYA subgroup. The TYA and children‟s PTCs may be either collocated or within the same
city.
15
2.5 The TYA PTC lead clinician:
2.5 Responsibility detailed in job plan
with evidence provided of:
a. has overall responsibility for
the TYA PTC MDT including
a. regular team meetings with
team working, the team
attendance register and
meeting and clinical audit;
evidence of Clinical audit
undertaken;
b. ensures clinical audit is
undertaken across the Cancer
b. TYA PTC lead clinician‟s
Network to evidence where coresponsibilities regarding
ordination of care is achieved
monitoring shared care
with optimal treatment
arrangements;
provided in the appropriate
c. service modernisation e.g.
age-related setting for each
process mapping and
new patient;
capacity/demand studies;
c. ensures that care is cod. dedicated administrative and
ordinated with joint decision
secretarial support;
making regarding clinical
e. attendance at LHB/Trust and
management of patients who
Network meetings.
present to clinical teams in
designated TYA hospitals;
d. ensures 24 hour telephone
advice is available for
clinicians from a named
specialist from the TYA PTC;
e. provides clinical advice and coordinate any modernisation
projects that are associated
with working of the TYA PTC
MDT;
f. has dedicated administrative
and secretarial assistance to
support the functioning of the
TYA PTC MDT;
g. attends both LHB/Trust and
Cancer Network meetings as
appropriate.
16
2.6 Each TYA designated hospital
2.6 Requirements to be detailed in job
14
has a lead clinician supported by a
plans.
Lead Nurse, The Lead Clinician has
the following roles and
responsibilities:
a. responsibility for the quality of
care provided by the hospital
and appropriate care pathways
are in place with the TYA PTC
for the patient age groups 16
to 17 and 18 to 24 years;
b. liaises with all site specific
cancer MDT lead clinicians
relevant to TYA cancers in the
hospital;
c. ensures participation in Cancer
Network clinical audits to
evidence whether treatment
guidelines and protocols
agreed by the Cancer Network
are implemented to the TYA
designated hospitals agreed
level of care that can be
provided;
d. ensures that a process is in
place so that if patients are
referred from the TYA
designated hospital to the TYA
PTC MDT, the referring
clinician will inform the
patient/carers with parental
responsibility15 of the possibility
of a diagnosis of cancer prior
to transfer;
e. ensures, where patients are
treated at the TYA designated
hospital, that a named key
worker16 and specialist
clinician are responsible for
coordinating the care of each
teenager and young adult.
They will ensure that the
treatment protocol agreed by
the relevant cancer site MDT
14
The lead clinician should have a practice in the designated hospital in at least one of the cancers
common to teenagers and young adults.
15
This applies to patients under the age of 18 years.
16
See Appendix 3 for role of key worker
17
and confirmed by the TYA PTC
MDT is delivered;
f. has dedicated administrative
and secretarial assistance to
support the role and attend
Cancer Network meetings as
appropriate;
g. works with the Cancer Network
to ensure registration in Canisc
of all new TYA patients within
a maximum of 2 weeks of
diagnosis.
h. Ensure access to TYA PTC
outreach services for patients
2.7 All teenagers and young adults
with cancer have a written
care/treatment plan.
2.8 24- hour telephone clinical advice
is available for clinicians from a
named specialist from the TYA PTC.
2.9 Each LHB hosting a TYA PTC or
a TYA designated hospital has a
process by which their Cancer
Management Teams report to their
Boards at least annually on
compliance with the National
Standards for teenagers and young
adults with cancer. These are made
available to the Cancer Network17.
2.10 An analysis of the reasons for
non-compliance with standards is
undertaken with action plans to
achieve compliance agreed by the
LHBs working through the Cancer
Networks.
2.7 To be developed
2.8 To be developed
2.9
a. Outline of process for annual
assessment.
b. Minutes of Health Board/Trust
Board meeting covering report on
compliance to standards.
2.10 Health Boards/Trust to provide
documentation of agreed action
plans.
17
If the TYA PTC or designated hospital receives patients from more than one Cancer Network, board
reports on compliance should be made available to each of these.
18
TOPIC: PATIENT-CENTERED CARE
OBJECTIVE 3: TO ENSURE THAT PATIENTS AND OR THEIR CARERS
HAVE SUPPORT AND ALL THE INFORMATION THEY REQUIRE
REGARDING
THE
DIAGNOSIS,
TREATMENT
OPTIONS
AND
TREATMENT CARE PLAN.
RATIONALE: Appropriate information, whether provided in written form or via
face-to face communication, is required to support teenagers and young
adults and their families/carers throughout the cancer journey. All healthcare
professionals need to be sensitive to potential problems with communication,
with information being tailored to the needs of individual patients. Teenagers
and young adults need appropriate information to make informed choices
about their treatment and how to access appropriate facilities. Special training
can improve communication skills in general and will provide for effective
communication of the diagnosis, treatment options and treatment care plan.
It is the Welsh Government‟s policy that everyone diagnosed with cancer will
have a nominated Key Worker to co-ordinate their care and provide support
whilst they are undergoing treatment in hospital or the community, and
subsequently after their treatment has finished. Appropriately skilled,
professional key workers should be identified to support teenagers and young
adults, and their families, by:
coordinating their care across the whole system and at all
stages of the patient pathway;
providing information;
assessing and meeting their needs for support.
Details of the role of the Key Worker are set out in Appendix 3.
The psychological needs of this patient group and their families are often not
addressed. People cope with distressing circumstances in a number of ways,
however for those facing the diagnosis of initial or recurrent cancer a number
will experience significant levels of anxiety and depression and may benefit
from specific psychological or psychiatric therapy. The input of psychological
support cannot be underestimated.
With increasing survival, the physical, emotional and social sequelae, which
may impair the quality of life in the long term, become more important.
Although many of those cured of cancer during childhood or young adulthood
will return to good health, others will experience significant late sequelae.
19
These sequelae can occur at any time during or following completion of
therapy and may include:
Impairment of endocrine function (including infertility, abnormal growth
and development or bone mineral accretion);
Cardiac and neurological impairment;
Cognitive decline e.g. following treatment for CNS tumours
Psychological effects and increased risk of developing a second
cancer.
On average, 4% of childhood cancer survivors develop a second primary
malignancy within 25 years of diagnosis although for certain diagnoses this
figure is higher. Radiotherapy is a particular risk factor. The risk of second
malignancy, which can occur many years after the primary diagnosis, is
estimated to be between four and six times the risk in the general population.
20
STANDARD
3.1 The TYA PTC MDT agrees a
communication policy regarding:
a. communication of agreed
essential information between
the TYA PTC and TYA
designated hospitals;
b. communication between
members of the team;
c. communication between the
team members and the patient
and their families/carers
including issues of fertility for
all patients where treatment
involves more than simple
surgery, and outlining the
benefits of peer support and
age-appropriate facilities at the
TYA PTC;
d. training of team members with
direct patient contact
specifically relating to
communication with young
adults and in relation to
breaking bad news;
e. allowing patients adequate
time to consider treatment
options.
3.2 The TYA PTC MDT and each
TYA designated hospital nominates a
person with sufficient cover to be
responsible for ensuring written
information is offered to all new
patients.
3.3 Written information in a language
and format appropriate to the patient
is offered to each new cancer patient
and their family. This includes:
a. general background
information about the specific
cancer;
b. detail of treatment options,
specific local arrangements
EXAMPLES OF MONITORING
CRITERIA18
3.1 Detail of MDT‟s communication
policies to include:
a. detail of agreed essential
information that is to be
communicated between MDTs;
b. evidence of communication
skills assessment/training;
c. evidence that the MDTs have
considered the views of its
patients or carers regarding
the appropriateness of
communication;
d. evidence that MDTs have
discussed fertility issues with
all patients, and if not, the
reasons why this has not been
undertaken.
3.2 Name of responsible person and
detail of provision of written
information within the communication
policy.
3.3 Copies of documentation provided
to patients/carers.
18
These examples are indicative of the monitoring that will be required. A separate comprehensive online monitoring tool is being developed and will be made available to LHBs to allow uniform selfassessment.
21
including information about the
MDT and support services and
whom the patient should
contact if necessary;
c. details of local selfhelp/support groups and other
appropriate organisations;
d. information about long-term
follow up and possible
sequelae;
e. details of clinical trials,
f. benefits of age-appropriate
place of care (e.g. TYA PTC).
3.4 The responsible MDT19 ensures
all communication with each patient
and their family is tailored to their
needs, including in relation to
language, culture and physical or
learning disabilities.
3.5 There is access to a private room
or area where patients and or their
carers can discuss the diagnosis in
conditions of adequate privacy with
the appropriate member of MDT
3.6 The responsible MDT20 for each
stage of patient care ensures that
patients are screened for ongoing
support needs including assessment
of educational, employment,
emotional and psychological support.
3.7 The patient‟s care plan is
appropriately updated as the person
moves beyond the active treatment
phase. This should include an end of
treatment summary, complications
experienced and existing or
anticipated late effects for long term
3.4 Detail audit of MDT
communication policy.
3.5 Details should be provided of
facilities available.
3.6 MDT operating policy to include
assessment for psychosocial support
at:
a. diagnosis
b. during treatment
c. end of definitive treatment
d. during long-term follow-up
e. relapse
f. during palliative care
g. bereavement
3.7 To be determined21
19
The relevant MDT could be either a cancer site MDT (adults) within a TYA designated hospital or a
TYA PTC MDT providing care in a Teenage Cancer Unit.
20
This could be the cancer site MDT or the TYA PTC MDT and is likely to be the site specific cancer
MDT after the initial agreement regarding the treatment plan.
21
Care Plans are a Welsh Government commitment and work is ongoing regarding their
implementation.
22
survivors. These should be made
available to the patient and
healthcare professionals.
3.8 A benefits/welfare rights specialist
provides the opportunity for teenagers
and young adults and their families to
receive benefit advice from the point
of diagnosis of cancer onwards.
3.9 Patients and their families found
to have significant levels of anxiety
and or depression are offered prompt
access to specialist psychological
support or psychiatric care capable of
providing level 3 and level 4
psychological interventions as defined
in the NICE Supportive and Palliative
Care Guidance
3.10 The Cancer Networks facilitate a
Network-wide approach to
psychological/psychosocial support
services as recommended in the
NICE Supportive and Palliative Care
Guidance, irrespective of the place of
care.22
3.11 Mechanisms are in place to
support teenagers and young adults
in improving their compliance with
treatment regimes.
22
3.8 Cancer Networks to detail access
to benefits/welfare rights specialist.
3.9 Cancer Networks to detail access
arrangements.
3.10 Cancer Networks to detail
access.
3.11 To be determined
Many services are community based/provided by the third sector and travel to the patient.
23
TOPIC: MULTIDISCIPLINARY TEAM
OBJECTIVE 4: TO ENSURE THAT CANCER CARE FOR YOUNG PEOPLE
IS PROVIDED BY A SPECIALIST MULTIDISCIPLINARY TEAM
RATIONALE: Patient care needs to be provided by an appropriate team of
specialists to ensure provision of high quality care, taking account of a range
of expertise within different specialities. The TYA PTC will co-ordinate
intensive treatment, psychosocial support and peer support for young people
with cancer. Each TYA PTC will host a TYA PTC MDT and will include
clinicians with expertise in cancers most frequently occurring in this age group
namely lymphoma, leukaemia, testicular, sarcoma and brain tumours.
Initial referral may be to an adult cancer site specific MDT that may or may not
be co-located with the TYA PTC. Systems must be in place to register all new
patients with the TYA PTC MDT regardless of where management occurs. An
appropriate treatment plan should be developed including the place of care
recognising that a number of young adults may opt to have all their cancer
treatment in adult services. In these circumstances the local site specific MDT
will deliver the treatment plan that has been jointly agreed or confirmed with
the TYA PTC MDT.
The MDT meeting where the recommended treatment plan is agreed could
occur as part of the regular site-specific MDT meeting or at the TYA PTC MDT
meeting, but ideally should include representation from members of the TYA
PTC MDT and the relevant site specific MDT 23. If this is not possible,
consultation between teams should occur as soon as possible afterwards.
Discussion with the TYA PTC MDT to confirm the treatment plan should not
delay start of treatment.
The clinical team will vary as the patient moves through the care pathway
from diagnosis and treatment to follow up and this is reflected in the following
standards. Standards setting out the requirements for communication
between clinical teams are covered under Objective 2.
Team working will support cover for annual leave, sick leave and holidays and
will enable the MDT to function at all times. Team membership will need to be
reviewed to ensure appropriate input into the management of patients and to
reflect new roles such as advanced practitioners as they become established.
The TYA PTC MDT should review and address workforce development and
members training needs as per NICE and other national guidance.
23
The use of teleconference/medicine will facilitate this
24
A programme of audit, defining performance against the cancer standards will
provide the LHBs/Trusts, Cancer Networks, TYA PTC MDT, TYA designated
hospitals, WHSSC, the public, and the Welsh Government with the
information needed to maintain and improve cancer services. Identifying and
rewarding areas of strength are important for morale and motivation. By
developing an effective audit programme, the Cancer Network can also
determine whether any weaknesses are due to organisational factors or to
resource issues, a distinction that is of the utmost importance in seeking the
appropriate remedy.
Standards for imaging, pathology and treatment modalities are detailed in the
cancer-site specific National Cancer Standards (2005) for services to adult
patients2.
25
STANDARD
EXAMPLES OF MONITORING
CRITERIA24
4.1 All clinicians treating teenagers
and young adults with cancer are part
of either the TYA PTC MDT or core
members of a cancer site MDT at a
designated TYA hospital or the
organisation hosting the TYA PTC.
This ensures that diagnosis,
treatment and patient management
decisions are taken by the
appropriate MDT.
4.1 Evidence to be provided as part of
annual audit by the LHBs.
4.2 The core membership of the TYA 4.3 The TYA MDT Lead Clinician to:
PTC MDT has a designated lead
a. detail names and designated
clinician25 and includes the following
time of MDT members
specialists26:
including documentation
a. Consultant oncologists27 with a
confirming sessional
special interest in:
commitment by clinicians and
cancer specific postleukaemia
registration qualifications of
lymphoma
team members;
testicular cancer
b. confirm that all oncologists are
brain and CNS cancers
core members of adult site
specific MDTs participate in
soft tissue sarcoma
annual cancer standards;
paediatric oncology
compliance self assessment
b. TYA lead nurse
c. detail arrangements for coc. Psychologist28
ordination and secretarial
d. Research Nurse
support;
e. TYA social worker
d. arrangements for cover when
core MDT members are
f. MDT Co-ordinator
absent;
e. documentation of referral
pathways between the local
TYA designated cancer site
MDT and the TYA PTC MDT.
4.3 The TYA PTC MDT has access to 4.3 Details of access.
24
These examples are indicative of the monitoring that will be required.. A separate comprehensive online monitoring tool is being developed and will be made available to LHBs to allow uniform selfassessment.
25
The designated lead clinician will be one of the TYA PTC MDT Core members
26
With appropriate and adequate cover for the service to run at all times
27
The oncologist will depend on the cancer site and includes haemato oncologists. Each must have a
practice in the relevant cancer which includes managing patients in the TYA age range. Each must also
be a core member of the equivalent MDT managing adult patients that must be compliant with the
Welsh National Cancer Standards/NICE service guidance.
28
To provide psychological support at a minimum of level 3 as per NICE guidance.
26
the following specialists29 as part of
an extended team:
Consultant level input from the
relevant site-specific MDTs;
CNSs from adult cancer MDTs
as appropriate to each patient;
Oncology outreach nurses;
Palliative Care team;
Dieticians;
Physiotherapists;
Occupational therapists;
Research data manager;
Cancer geneticists;
Therapy radiographers.
4.4 The TYA PTC MDT has
immediate on site access to the
following:
Intensive Care;
Neurosurgical services;
Tertiary services including
cardiology, renal,
endocrinology, nuclear
medicine);
Dental services;
Pain management team;
Palliative care team.
4.5 Each patient has a key worker30
4.6 The joint TYA PTC MDT/
designated TYA hospital cancer site
MDT care plan covers ongoing
surveillance for late effects and
psychological support and is drawn
up with input from:
4.4 Details of access.
4.5 To be determined31.
4.6 Audit of Care Plans.
Lead clinician (oncologist with
expertise in late effects);
Key worker;
Specialist nurse;
Endocrinologist;
29
This only applies to patients treated by the TYA PTC MDT at the PTC.
This applies to patients wherever they are managed, The initial named key worker should be
allocated at the MDT meeting where the initial diagnosis occurs, if not before.
31
Current work is underway to monitor implementation of key workers for all cancer patients
30
27
Appropriate allied health
professional;
Psychological services
clinician;
4.7 The TYA PTC MDT meeting is
4.7 The TYA MDT Lead Clinician to
held every week to discuss cases,
a. Detail meetings held and %
and agree and record individual
attendance of team members;
treatment plans. This includes
b. Audit of MDT discussion of
confirmation of plans submitted by
management plan in patient
designated TYA hospital cancer site
notes.
MDTs. Each TYA PTC MDT core
member or their deputy attends all
meetings as required by the TYA PTC
MDT lead clinician32. The MDT
follows an agreed policy for review of
the management of all patients
currently undergoing treatment or
supportive care regardless of the
setting.
4.8 The lead clinician in the TYA PTC 4.8 Detail:
MDT and in each designated TYA
a. Number of new malignant
hospital ensures that all relevant
cancer cases referred to the
sections of the all Wales Cancer Data
team per year and recorded on
Set are completed for each new
the all Wales Cancer data Set.
patient diagnosed with a malignancy.
b. % completion of all Wales
Core Cancer Data Set.
c. % completion of all Wales
Extended Cancer Data Set.
4.9 The TYA PTC MDT and cancer
4.9 Clinical Network annual report to
site MDTs in designated TYA
detail Network-wide audit
hospitals participates in UKprogrammes and resulting action
wide/national clinical audit as
plans.
specified by the Cancer NSAG
4.10 LHBs/Trusts ensure that the
4.10 WCISU to monitor registrations
expected registration of incidence
received against expected
using the Patient Episode Database
registrations (based on an average of
for Wales data is submitted to the
the last 3 years registration per
Welsh Cancer Intelligence and
Organisation).
Surveillance Unit (WCISU) within 3
months of calendar year end.
32
Attendance of core group oncologists at the MDT meeting will depend on the patient treatment plans
to be discussed and agreed.
28
TOPIC: INITIAL REFERRAL AND TIMES TO TREATMENT
OBJECTIVE 5: TEENAGERS AND YOUNG ADULTS WITH CANCER
SHOULD BE REFERRED, DIAGNOSED AND TREATED IN A TIMELY AND
APPROPRIATE FASHION
RATIONALE: The majority of teenagers and young adults with acute or
rapidly progressing disease will require prompt diagnosis and treatment. The
cancer waiting times targets included in this Topic are designed to achieve
this. Shorter waiting times are required for specific cancers where clinically
indicated. For certain types of cancer the definitive treatment policy is initial
surveillance with specific anti-cancer therapy deferred until such time as it is
clinically indicated.
Teenagers and young adults may develop a clinical problem while out of
hospital at any time e.g. neutropenic fever/haemorrhage. It is therefore
essential that teenagers and young adults and their families/carers have
immediate access for advice or treatment as required by guidance on
Systemic Anti-Cancer Therapy33. The recommendations of this report are
being implemented across Wales.
Standards for imaging, pathology and treatment modalities are detailed in the
cancer-site specific National Cancer Standards (2005) for services to adult
patients2
33
“Systemic Anti–Cancer Therapy: For better, for worse?” National Confidential Enquiry into Patient
Outcomes and Deaths, 2008.
29
STANDARD
EXAMPLES OF MONITORING
CRITERIA34
5.1 LHBs working through the Cancer
Network agree referral guidelines for
use by the TYA PTC MDT and
designated TYA cancer site MDTs
that are in accordance with NICE
referral guidelines for suspected
cancer.
5.1
5.2 Written referral pathways are
drawn up by LHBs working through
the Cancer Network which detail the
patient journey from whichever point
patients access the system across
the network. These pathways include
investigation of suspicious lumps and
inconclusive scans that may indicate
a cancer diagnosis.
a. Confirmation from the Cancer
Network that all local GPs in
the area have a copy of
referral guidelines.
b. Audit of referrals to confirm
that guidelines are being
followed.
5.2 Confirmation that the Cancer
Network has a copy of the agreed
pathways.
5.3 LHBs and Trusts, working through 5.3 Networks to provide evidence of
the Cancer Network, ensure that
review of agreed referral pathways.
referral pathways are adhered to
particularly where pathways cross
Health Board/Trust or Network
boundaries.
5.4 Teenagers and young adults
presenting to their GP with symptoms
with the criteria for suspected cancer
are referred as „urgent suspected
cancer‟ to the TYA PTC MDT or
designated TYA hospital.
5.4 Audit of referral process.
5.5 For patients aged 16 to 17 years
referred initially to a TYA designated
hospital, a process is in place to
ensure rapid communication between
the lead clinician at the hospital and
the TYA PTC Lead Clinician
regarding management of the patient
once a cancer is suspected or
diagnosed.
5.5 Communication policy to detail
these requirements.
34
These examples are indicative of the monitoring that will be required. A separate comprehensive online monitoring tool is being developed and will be made available to LHBs to allow uniform selfassessment.
30
5.6 Confirmation of the diagnosis of
malignancy reaches the GP by the
end of the next working day after the
patient/ family has been informed.
5.6 Audit of proportion of patients
diagnosed with cancer where
information was sent to the GP within
the required timescale.35
5.7 Patients referred as urgent
suspected cancer by the GP and
confirmed as urgent by a member of
the TYA PTC MDT or cancer site
MDT, if diagnosed with a malignancy,
start definitive treatment within 2
months of referral at the hospital.
5.7 Waiting times from receipt of
„urgent suspected cancer‟ referrals to
start of definitive treatment.
5.8 When diagnosed with a cancer,
patients not already included as an
urgent suspected cancer referral start
definitive treatment within 1 month
from diagnosis regardless of referral
route.
5.8 Waiting times from diagnosis to
start of definitive treatment.
5.9 Following discussion of the
5.9 Joint audit between the TYA PTC
diagnosis and an initial treatment plan MDT and referring designated TYA
the cancer site MDT lead clinician in a hospitals.
TYA designated hospital confirms the
treatment protocol with the TYA PTC
MDT lead clinician or core oncologist
with the relevant expertise. This must
not delay the start of treatment.
5.10 Teenagers and young adults
5.10 Audit of waiting times for this
diagnosed with acute leukaemia, if
patient group.
considered suitable for treatment,
start definitive treatment as soon as
possible and always within one month
of receipt of the referral at the
hospital.
5.11 Intensive chemotherapy for
acute leukaemia and lymphomas
without stem cell transplantation is
only undertaken in TYA designated
hospitals meeting the requirements of
the BCSH.
35
5.11 Detail the number of patients
receiving intensive chemotherapy for
acute leukaemia and lymphomas
without stem cell transplantation for
the BCSH cancers identified.
The site specific MDTs are responsible for informing the GP of the diagnosis.
31
5.12 A referral pathway for neuro5.12 Confirm that referral pathway in
rehabilitation services is in place for
place.
teenagers and young adults with CNS
malignancies. 36
5.13 Patients undergoing
radiotherapy are treated within the
maximum waiting times as
recommended by the Joint Collegiate
Council for Oncology
36
5.13 Waiting times from receipt of the
request form by the radiotherapy
department, or verbal request, to the
date of the first radiotherapy fraction.
National Standards for Brain and CNS Tumours is in preparation
32
OBJECTIVE 6: TEENAGERS AND YOUNG ADULTS WITH CANCER
SHOULD BE DIAGNOSED, STAGED AND TREATED PROMPTLY AND INLINE WITH BEST PRACTICE GUIDELINES
RATIONALE: It is important that patients are given access to clinical trials. It
is also essential that clinicians consider the biology of each patient‟s particular
cancer. Where there is evidence for patient benefit, patients aged 18-24 years
should be offered access to paediatric protocols as advised by the TYA PTC
MDT. It is unlikely that many paediatric trials will be open outside of a TYA
PTC and the consequences of choosing not to be treated in a PTC in terms of
access to trials should be clearly explained to young people, in particular
those aged 18 and over as part of their decision making process.
Standardisation of referral pathways and clinical protocols for supportive care
across the Cancer Network will enable outcome assessment to be performed
in a uniform manner, and staff gain greater expertise by concentrating on a
lesser number of well-defined protocols.
Standards for imaging, pathology and treatment modalities are detailed in the
cancer-site specific National Cancer Standards (2005) for services to adult
patients2
33
STANDARD
EXAMPLES OF MONITORING
CRITERIA37
6.1 Clinical management of patients38
including follow-up follows written
locally agreed clinical policies, in-line
with the NICE service guidance and
clinical guidelines when published.
These clinical policies are developed
by the TYA PTC and include:
a. febrile neutropenia;
b. raised intra cranial pressure;
c. central venous access;
d. nausea/vomiting and bowel
disturbance;
e. use of blood products;
f. pain management;
g. oral and dental care;
h. rehabilitation;
i. psychosocial care.
6.2 The TYA PTC MDT ensures
cognitive assessment is available via
neuropsychology services for
teenagers and young adults with CNS
tumours.
6.3 The TYA designated hospital or
the TYA PTC MDT refers young
adults with suspected rarer tumours
(e.g. liver tumours, retinoblastoma,
bone or soft tissue sarcoma) to an
appropriate specialist centre that
complies with NICE service guidance.
6.4 Teenagers and young adults
diagnosed with leukaemia and being
treated in TYA designated hospitals
providing a service level >1 (BCSH
Guidelines) have emergency access
to the treating MDT.
6.1 Documentation detailing:
a. the agreed clinical policies;
b. evidence from clinical audit
that policies are being
followed.
6.2 Evidence from clinical audit that
cognitive assessment is undertaken.
6.3 Documentation to provide
evidence that specialist centres are
designated by LHBs working through
Cancer Networks , are meeting the
NICE service guidance and are
participating in local and national
clinical audit.
6.4 Detail arrangements for patient
access to the treating MDT at any
time in the case of an emergency.
37
These examples are indicative of the monitoring that will be required. A separate comprehensive online monitoring tool is being developed and will be made available to LHBs to allow uniform selfassessment.
38
It should be noted that existing standards for adult cancer services for imaging, pathology,
radiotherapy and chemotherapy apply to all services pertaining to the TYA PTC MDT and designated
TYA hospitals.
34
6.5 The TYA PTC MDT working with
the adult cancer site MDTs in TYA
designated hospitals ensures all
patients are offered optimal treatment
even if this necessitates that the
patient is transferred to another MDT
or to the TYA PTC MDT.
6.5 Evidenced by national and
Cancer Network clinical audit.
6.6. The TYA PTC MDT working with
the adult cancer site MDTs in TYA
designated hospitals ensures all
patients are given the opportunity to
enter approved39 clinical trials for
which they fulfil the entry criteria.
6.7 The Welsh Cancer Trials Network
to provide evidence of numbers of
patients entered per trial per year.
LHBs through their cancer networks
should monitor the number of patients
in this age group who are entered into
trials, with particular attention to those
aged 18 and over, who are eligible for
paediatric trials but chose not to be
treated at the PTC TYA.
39
Approved by the TYA subgroup of the Cancer Network.
35
OBJECTIVE 7: TO ENSURE THAT ALL TEENAGERS AND YOUNG
ADULTS RECEIVE ADEQUATE ASSESSMENT OF, AND PROVISION
FOR, PALLIATIVE CARE NEEDS AT ALL TIMES AND IN EVERY
SETTING. THIS INCLUDES CARE OF DYING PATIENTS, THEIR FAMILIES
AND CARERS
RATIONALE: The palliative approach may be applicable at any stage of a
patient‟s illness and incorporates the particular needs of the dying patient. It
is the responsibility of all health professionals caring for those with
progressive life-threatening disease, informed by a knowledge of palliative
care principles and practice and supported by a specialist palliative care team.
Choice about the location of palliative and end of life care is reported to be
one of the most important things to a young person in the palliative stage of
their illness. This choice, which should include home and/or an age
appropriate environment, supported by clinical expertise, needs to be
available and expertly communicated.
36
STANDARD
EXAMPLES OF MONITORING
CRITERIA40
7.1 All health professionals engaged
in care receive training to allow
adequate assessment and delivery of
general palliative care.
7.2 There are clear arrangements to
access specialist palliative care
services.
7.1 Details of LHB/ Trust and Cancer
Network arrangements for staff
education and training in palliative
care principles and practice.
7.2 Details in MDT guidelines of
access arrangements to specialist
palliative care as defined in the
National Standards for Specialist
Palliative Care.
7.3 Palliative care needs are rapidly
7.3 Details to be provided of on-call
addressed, and specialist palliative
medical service out of hours that
care advice available, in all settings,
allows:
24 hours a day.
a. in-patient hospital or hospice
visits;
b. domiciliary visits;
c. telephone advice to other
professionals;
d. telephone advice directly to
patients or families;
e. other support.
7.4 An integrated system is in place in 7.4 Detail in MDT guidelines on use
all care settings to ensure best
of end of life care pathway.
practice in the multi-professional care
of dying patients. The All Wales Care
Pathway for the Last Days of Life
represents an appropriate model.
7.5 All profession-specific teams
7.5 Details of:
engaged in palliative care provision,
a. Availability of post registration
have at least one member who has
education and training
undergone post-registration education
programmes.
and training in palliative care.
b. LHB/Trust identification of
staff training priorities in
palliative care.
40
These examples are indicative of the monitoring that will be required. Performance against the
standards needs to be based on robust evidence. To achieve this monitoring of compliance uses
information on key aspects of service provision collated over a year rather than at a single time point. A
separate comprehensive on-line monitoring tool is being developed and will be made available to LHBs
to allow uniform self-assessment.
37
APPENDICES
APPENDIX 1 - THE CHILDREN AND YOUNG PEOPLE’S SPECIALISED
SERVICES PROJECT
In the past, specialised services for the children and young people of Wales
were delivered in an ad hoc and fragmented way. This was identified by the
Specialised Health Service Commission for Wales, when they undertook a
review of specialised services41,42. Following this review, the Minister for
Health and Social Services announced that the future of specialised services
for children would be through the development of Managed Clinical
Networks43.
The Children and Young People‟s Specialised Services Project (CYPSSP)
was established by the Welsh Government to take this work forward. The
documents apply to all children and young people with specialised health
needs, wherever they live in Wales44.
The following topics are covered by the Universal CYPSSP Standards. These
should be read alongside these National Standards for Teenagers and Young
Adults:
Access to Specialist Health Care Services
Resourcing of Specialised Healthcare Services
Care of the Child and Family/Patient Experience
Communication
Evidence Base, Professional Education and Training/Clinical Governance
In addition to cancer services, the other specialised services included in the
CYPSS project are:
Neonatal Services
Paediatric Neurosciences
Neuro-surgery
Neurology
Neuro-disability
Paediatric Palliative Care
Paediatric Critical Care (standards already published)
Paediatric Specialist Anaesthesia and surgery
Anaesthetics
General Surgery
41
Specialist Health Services Commission for Wales. Review of Tertiary Services for the Children of
Wales. (May 2002)
42
Specialist Health Services Commission for Wales. A Special Service: The future of specialist
healthcare for the Children of Wales (June 2002)
43
Welsh Assembly Government. Health and Social Services Committee papers HSS-18-02
44
CYPSS www.wales.nhs.uk/cypss
38
Trauma and orthopaedics
Ear Nose and Throat
Opthalmology
Plastic Surgery
Burns
Maxillo-facial
Cleft Lip and Palate
Paediatric Nephrology
Paediatric Cardiology and Congenital Cardiac Services (and access to
Cardiac Surgery)
Paediatric Endocrinology
Paediatric Gastroenterology/Hepatology and Nutrition
Paediatric Inherited Metabolic Disease
Paediatric Respiratory
39
APPENDIX 2 – Membership of the Standards Working Group
Professor Roger Taylor
(Chair)
Abertawe Bro Morgannwg University Health
Board
Ms Sarah Barklam
Welsh Health Specialised Services
Committee
Ms Laura Clark
Cardiff & Vale University Health Board
Mr Simon Davies
Teenage Cancer Trust
Mr Mike Fardy
South Wales Cancer Network
Ms Zoe Goodacre
Welsh Health Specialised Services
Committee
Dr Richard Hain
Cardiff & Vale University Health Board
Dr Jane Hanson
Cancer NSAG
Mr Damian Heron
North Wales Cancer Network
Dr Meriel Jenney
Cardiff & Vale University Health Board
Professor Malcolm Mason
Cancer Services Co-ordinating Group
Dr Heather McDowell
Royal Liverpool Children‟s NHS Trust
Mr Hywel Morgan
South Wales Cancer Network
Ms Patricia O‟Meara
Aneurin Bevan Health Board
Ms Rhian Prichard
Betsi Cadwaladr University Health Board
Dr Clare Rowntree
Cardiff & Vale University Health Board
Dr Katherine Wooding
Abertawe Bro Morgannwg University Health
Board
40
APPENDIX 3 - The Role of the Key Worker (Table 7 NICE Improving
Outcomes for Children and Young People with Cancer)45
Provide practical and emotional support to the child/young person and
family
Co-ordinate the provision of information and ensure that it is timely,
tailored to the age of the child or young person and the needs of the
family, and understood
Ensure the provision of a written care/ treatment plan and an initial needs
assessment of the child or young person and family to inform the care plan
Liaise with the health and social care agencies and professionals in the
community, including the primary care team
Liaise with educational institutions and support reintegration for the child or
young person wherever possible
Ensure that the child, young person and family acquire new skills as
needed, for example, care and management of nasogastric tubes or
gastrostomies, care of central lines
Care-manage the care needs of the child or young person and family as
they move between care settings and along the patient pathway, for
example, during radiotherapy
Co-ordinate palliative and terminal care to provide specialist advice and
support to families and healthcare professionals, with cross-cover to
provide a 24-hour service, if required. The key worker may provide direct
clinical care and expertise at this time if appropriate
45
National Institute for Health and Clinical Excellence (2005) Cancer Service Guidance: Improving
Outcomes in Children and Young People with Cancer - The Manual.
London: NICE. Available from www.nice.org.uk Reproduced with permission. p98
41
APPENDIX 4 – Glossary Acronyms
acronym
NICE
TYA
NHS
PTC
MDT
LHB
NSAG
WCISU
CNS
TYACN
TYA PTC
CLC
GP
BCSH
WCTN
full
National Institute for Health & Clinical Excellence
Teenagers & Young Adults
National Health Service
Principal Treatment Centre
Multi Disciplinary Team
Local Health Board
National Specialist Advisory Group
Welsh Cancer Intelligence & Surveillance Unit
Central Nervous System
Teenagers & Young Adults Cancer Network
Teenagers & Young Adults Principal Treatment Centre
Cancer Lead Clinician
General Practitioner
British Committee for Standards in Haematology
Wales Cancer Trials Network
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