Outcome Measures for Children and Young People with Cancer in Scotland
The Outcome Measures for children and young peoples' cancer care in Scotland have been developed through dialogue with clinical and managerial staff across Scotland. They relate to comparable international standards for care, including those developed for the other UK countries, and they reflect the NHS Scotland Healthcare Quality Strategy ambitions to deliver patient centred, safe and effective care, provided in the right place by staff who have the appropriate training and expertise.
Performance Indicators will be developed in order to measure compliance with the Outcome Measures.
1. OUTCOME: Organisation
The Managed Service Network (MSN) for Children and Young People with Cancer will bring together key stakeholders involved in the planning and provision of cancer care, in an open and transparent management structure.
|1.1. The MSN will define care pathways for the management of all children and young people in Scotland with cancer.|
|1.2. The MSN will be constituted to ensure representation across Scotland and across the various disciplines involved.|
| 1.3. The MSN will appoint a National Clinical Director supported by clinical leads for: |
1.3.1. Governance and Quality Assurance
1.3.2. Palliative Care
1.3.4. Teenagers and Young Adults
| 1.4. Governance and Quality Assurance: |
1.4.1. Organisational Governance
1.4.2. Clinical Governance which will include:
|1.5. The MSN will produce a Cancer Plan periodically and an annual report.|
2. OUTCOME: Initial Referral to treatment
All Children and Young People diagnosed with Cancer must be referred, diagnosed and treated in a timely and appropriate fashion. The majority of children and young people with cancer have acute or rapidly progressing disease which requires prompt diagnosis and treatment. For certain types of cancer the definitive treatment policy is initial surveillance with specific anticancer therapy deferred until such time as it is clinically indicated.
|2.1. The MSN will agree referral guidelines for use by the national MDTs and treatment centres that are in accordance with best practice guidelines.|
|2.2. The MSN will determine and monitor the referral pathways for children and young people with suspected cancer from whichever point they access the system.|
3. OUTCOME: Patient Centred Care
All Children and Young People diagnosed with Cancer, and their parents or carers will have support and all the information they require regarding the diagnosis, treatment options and treatment care plan. Patient, and parent or carer, choice should be delivered wherever possible. Appropriate support will be available to ensure children, young people and families can carry on with as normal a life as possible whilst having treatment for cancer.
|3.1. The MSN will ensure that the referring clinician informs the child/young person (where appropriate) and their parents or carers of the possibility of a diagnosis of cancer prior to transfer to a treatment centre.|
|3.2. The MDT advising on diagnosis and management, through the Responsible Consultant must ensure that all decisions about diagnosis and management are fully communicated to the child/young person (where appropriate) and their parents or carers in an appropriate way.|
|3.3. Treatment centres and shared care units must communicate about diagnosis and management decisions in real time between themselves and primary care. The direction of flow of information will be determined by the consultant making the decision.|
|3.4. Children and young people will have access to age appropriate facilities and age appropriate multimedia information.|
|3.5. Parents and carers will have access to appropriate facilities to stay with their child and will have access to appropriate multimedia information.|
4. OUTCOME: Multidisciplinary Teams
All Children and Young People diagnosed with Cancer will be discussed within a National MDT setting which will ensure that all cancer care for children and young people is provided by specialist multidisciplinary teams locally. Care provided by teams should be well co-ordinated to provide an efficient, effective and safe service to all patients, which is age appropriate.
| 4.1. There will be National MDTs for: |
4.1.2. Solid Tumours including Lymphoma
4.1.3. CNS tumours
These will convene and operate as agreed by the MDT Project Board.
| 4.2. There will be appropriate national arrangements, including national MDTs if necessary, for: |
4.2.1. Palliative Care
4.2.3. Teenagers and Young Adults
These will convene at an appropriate frequency to deliver care effectively, and will vary.
|4.3. The National MDTs' decisions will be communicated to the Treatment Centres and Shared Care units who will then deliver care locally via local MDTs which will include management and supportive care.|
|4.4. The Lead Consultant for each patient will have the overall clinical responsibility for delivering care for that patient.|
5. OUTCOME: Diagnosis, Staging and Treatment
Children and young people with cancer should be diagnosed, staged and treated promptly and in line with nationally agreed best practice guidelines and/or appropriate national/international clinical trials.
Location of treatment should ensure that the best treatment is delivered at all times but taking into account that some treatments and supportive care may be possible at shared care units. This should be delivered by appropriately trained staff who have the required expertise (for some highly technical or novel treatment this may mean treatment outside Scotland).
| 5.1. Diagnostics |
All Children and Young People with Cancer will have access to high quality diagnostic services e.g. pathology, genetics, radiology, haematology, biochemistry etc where and when they need them.
| 5.2. Surgery |
All Children and Young People with Cancer will have access to high quality surgical services whatever the subspecialty required.
| 5.3. Radiation Oncology |
All Children and Young People with Cancer will have access to high quality radiation services.
| 5.4. Paediatric and Clinical Oncology |
All Children and Young People with Cancer will have access to high quality Chemotherapy and Pharmacy services.
| 5.5. Support Services |
All Children and Young People with Cancer will have access to high quality support services including PICU, HDU, Psychological services, Pain management etc.
6. OUTCOME: Rehabilitation
All Children and Young People with Cancer will have access to high quality rehabilitation services which will maximise their capabilities.
|6.1. All Children and Young People with Cancer will have access to high quality rehabilitation services which will maximise their capabilities.|
7. OUTCOME: Survivorship
All Children and Young People with Cancer will have access to high quality long term follow up care.
|7.1. All Children and Young People with Cancer will have access to an integrated and systematic approach to long term follow-up.|
8. OUTCOME: Palliative Care
All Children and Young People with Cancer will have access to high quality palliative care needs at all times and in every setting. This will include care of dying patients, their families and carers.
|8.1. The framework for Palliative Care for Children and Young People in Scotland will be used to provide Palliative Care for children and young people with cancer in Scotland to ensure equitable, safe, effective palliative care for patients and families where and when they require it.|
Email: Fiona McKinlay