1

Meeting: Brain and CNS Expert Advisory Group

Date: 3 November 2017

Time: 9.00 – 12.00

Venue: Evolve Business Centre

Present: Caroline Barber- Miller, Occupational Therapist, South Tees CB

Jenny Collins, Physiotherapist, South Tees JCo

Serena Hartley, Neuro-Oncology Physiotherapist, South Tees SH

Phil Kane, Consultant Neurosurgeon, South Tees PK

Chris Tasker, GP Cancer Lead, NESCN CT

Sophie Williams, Clinical Neuropsychologist Newcastle SW

Sarah Azhdari-nia, N/S Neuro oncology, Newcastle SA

Linda Wintersgill, Information Manager, Cancer Alliance LW

Anne Richardson, LWBC, Cancer Alliance AR

Pam Lee, LWBC Clinical Lead, Cancer Alliance PL

David Scoones, Consultant, South Tees DS

Pauline Sturdy, Macmillan Neuro-Oncology Specialist Nurse, South Tees

PS

Gill Hendry Macmillan Neuro-onc Specialist Nurse South Tees GH

John Crossman Neuro Surgeon Newcastle Hospitals JCr

In Attendance Claire McNeill, Quality Surveillance Co-ordinator, Cancer Alliance CM

Karen Dunn, Business Support Assistant, Cancer Alliance KD

Apologies: Penny Williams, Research Delivery Manager PW

Anil Varma, Consultant Neurosurgeon, South Tees AV

Joanne Lewis Clinical Oncologist Newcastle Hospitals JL

Emily Rees, Neuro-oncology Support Sister, S Tees ER

Tony Branson, Medical Lead, Cancer Alliance TB

Jean Gardner Patient & Carer Rep NESCN JG

MINUTES

1. INTRODUCTION Lead Enc

1.1 Welcome and Apologies

PK welcomed all to the meeting, apologises as listed above.

1.2 Declaration of conflict of Interest

No declarations of conflict of interest were made.

1.3 Minutes of the previous meeting 28.04.17

Page 1, final paragraph SC should read DS. Page 2, Clarification that the action marked against JC was for John Crossman. Minutes were then agreed as a true and accurate record.

Enc.1

1.4 Matters arising

Neuro Pathologist South Tees Vacancy Update

Kath Jones had sought advice from TB as to whether the Alliance should be speaking to Specialised Commissioning. A response from TB was awaited.

2

PK stated that he was not aware of any plans to recruit a replacement at South Tees. The lack of holiday cover for reporting of intra-operative smear examination would cause delays or changes to patient’s pathways. He was aware that AV had drafted a letter for discussion with TB. AV and TB to liaise directly regarding this and an update to be provided at the next meeting. This was currently recorded on the South Tees Trust Risk Register.

AV/TB

Digital Solution Update (tele-pathology)

In the absence of TB, an update would be obtained on his return and circulated/discussed at next meeting as appropriate.

KD

2WW referral update to Radiology Group

Kath Jones had advised this had not been discussed at the last radiology meeting, however, she has had emailed Ralph Jackson [chair] for his comments as to how to progress this. Email was circulated 2.11.17 regarding revised 2WW referral form (enclosure 2) asking for feedback. All comments to be fed back to Katie Elliott. katieelliott@nhs.net

All

Enc.2

Post MRI Referral pathway

Discussed by JCr in relation to the 2week pathway. CT confirmed no changes had been made from the last version. PK confirmed that members accepted the pathway. Group discussed the inappropriate use of 2WW referrals. Pathway to be circulated with minutes.

KD

Enc.3

South Tees Local Presentation to Radiology EAG

Kath Jones advised that she had been unable to progress this as PK had been unable to give access to the presentation. PK confirmed that it could now be presented to the radiology EAG and would forward a copy.

2. AGENDA ITEMS

2.1 Cancer Alliance Update

The Alliance had been successful in obtaining transformation monies for stratified follow up and recovery package activities. Funding was now in place and an Implementation plan was currently being written up. Staff Recruitment Going forward KD would provide Admin support for the Group AR updated the Group on living with and beyond cancer

3

transformation funds and also introduced PL as the new clinical lead for this project.

2.2 Cancer Transformation Bids - Update

Cancer Transformation plan on a page was now accessible via the website. http://www.necn.nhs.uk/wp-content/uploads/2014/04/Cancer-plan-on-a-page-FINAL.pdf

2.3 Clinical Guidelines

- Ownership of Amendments PK discussed the large amount of work involved in reviewing and revising the Clinical Guidelines. He had spoken with the Chair who had recommended a group approach to share the workload. KD to forward the spreadsheet AV had prepared to the Group which allocated sections to individuals. A copy of the Clinical Guidelines will also be circulated at this time. It is proposed to have a draft update available for the group to review by 14 February 2018. Therefore the deadline for review and return of the updated sections will be 30 January 2018 to enable the Alliance to collate all the updated documents. KD to send out the necessary documentation to all members of the Group. Group discussed the importance of having appropriate and up to date guidelines. It was agreed that there would be a full review every 2 years with a brief yearly review.

- To discuss rehab policy of the Alliance The Group agreed to include over-arching standards for rehabilitation in the Clinical Guidelines which will be reviewed in line with the above.

KD

All

KD

2.5 Trials Recruitment

Penny Williams was unable to attend the meeting, but shared the following update: There has been recruitment to two studies in 2017/18; EORTC 1320 and VINILO. The EORTC study closed to recruitment in July 2017. Dr Lennard, Associate Lead for CRN, Penny Williams and JL, subspecialty lead for brain cancer, are meeting this month to discuss the research portfolio and potential future trials. JC outlined a number of trials, details attached.

JCr

Enc.4

4

SW updated on a joint Research project with Newcastle University regarding patient self-management led by Professor Linda Sharp. SW to invite Linda Sharp to present at the next meeting. KD to add to next meeting Agenda.

SW

KD

2.4 Catnon Study PK reported that the results of the Catnon trial had been published in the Lancet and queried as to whether these should be adopted across the Alliance. No oncology representative was present at the meeting. JL was leading on this in Newcastle. JL to present at the next meeting for the group to consider standardisation across the Alliance.

JL

3. STANDING ITEMS

3.1 Living with and beyond cancer

Alliance Presentation by Pam Lee. Attached for information. PL informed the group of the successful bid for living with and beyond cancer transformation monies specifically pathways and recovery package. Currently planning spend against projects and meeting with the hosting CCG to discuss finance. A number of projects are detailed below:

Health and wellbeing events – patients requested

Primary care

Late effects MDT Project will contribute to evidence base and systems change by gathering evidence to influence primary and secondary care. Following a query regarding access to “straight to test in Gateshead”, PL confirmed Gateshead is currently not offering straight to test. The Cancer Alliance is working with Gateshead FT to address this, although there is no timescale identified yet. JCo discussed the importance of physical activity and the impact it can make. PL to contact JCo outside the meeting to discuss further. NUTH response regarding Survivorship initiative attached for information. South Tees response regarding Survivorship initiative attached for information.

PL

Enc.5

Enc.6

Enc.7

3.2 Audit Updates

National Acoustic Neuroma Audit – update JCr advised the group he had received an email stating that membership of the audit was to become mandatory for

5

neurosurgical units managing acoustic neuroma: this was to be ratified at the Base of skull surgery society meeting in early 2018 and would become a peer review measure. All neurosurgical units had until 13/11/17 to enter their data. JCr commented on available data which showed a reduction in numbers of tumours being operated on which would be expected, as small tumours were being treated with Gamma Knife/SRS. However, conflicting data was being recorded by the larger centres. PK expressed concern that the South Tees unit were not aware of this and currently were unable to access the audit database. JCr to send copy of relevant email to PK.

JCr

3.3 Activity Reporting LW stated that data was to be presented to the group once a year. The presentation will be forwarded to the Group for information, however, this will not be loaded to the website as it contains unpublished data. LW to consider the following:

- benign tumour patient numbers.

- Incidence trends have increased: group discussed if re-profiling could affect this and had incidence increased or could it be explained by improvement in detection. LW to investigate further.

- LW to look at trends to compare retirement areas, to see if

the elderly impact on these figures.

- Mortality Trends particularly the under 75s.

- LW to liaise with the Registry to clarify the mortality data relating to brain cancers.

- LW to investigate the total of the 2WW referrals with South

Tees and Newcastle Trusts.

- LW to investigate the annual activity for 2015/16.

National Cancer Dashboard LW Introduced the new National Cancer Dashboard, which could be used as a point of reference.

COSD See link below to access COSD data.

Patient Experience Report Jo Mackintosh had recently been appointed as Engagement and Co-Design Programme Manager and would be looking at the patient experience reports.

KD

LW

6

LW asked the group to review all the information and feedback any discrepancies, which would be investigated further.

All

3.4 Clinical Governance Issues

PK updated on the current lack of Neuro radiology support and stated this will deteriorate further in February 2018 when an additional member of staff leaves. This will result in the Trust having no neuroradiologist for MDT. The Trust is working to resolve this and it is recorded on the Trust risk register.

3.4 Any Other Business

PK noted absence of Chair, Vice-chair and oncology representation. He queried details of TOR in relation to constitution of a quorate meeting. The EAG were advised that new Terms of Reference were currently in draft form, awaiting formal sign off. The Draft is attached for information/consideration and will be discussed further at the next meeting.

KD

Enc.8

3.6 Meeting dates

Proposed dates awaiting confirmation: Friday 4 May 2018 9.00 – 12.00, Evolve, Business Centre, Houghton le Spring Friday 2 November 2018, 9.00 – 12.00, Evolve Business Centre, Houghton le Spring

4. MEETING CLOSE

Contact k.dunn2@nhs.net tel 01138251608

Neuro-Oncology MDT meeting

Friday 3rd

November 2017

Page 1

Clinical Trials for CNS MDT

OPEN ABT414 EGFR amplified GBM. INTELLANCE STUDY Patient to be approached pre surgery if possible to request permission to examine tissue. Should be a candidaye for Stupp ie PS 0/1/Good 2 KPS 70% ie self caring at least and awake more than 50% of day. 40% of GBMs will be amplified. Stupp vs Stupp + ABT414 Trials officer: Katherine Stevenson 38437 Katherine.Stevenson@nuth.nhs.uk PI: Dr Joanne Lewis, Dect 39355 Joanne.Lewis@nuth.nhs.uk Coming soon – 1-2months

Meningioma ROAM: Randomised trial adjuvant radiation versus observation in patients with complete resection of atypical meningioma. Approach patient: Soon after histology available. Patients should have study discussed as possibility pre-op for any suspected grade 2 meningioma 3 month to start treatment window so begin to identify patients now Trials officer:Katherine Stephenson 38437 Katherine.Stevenson@nuth.nhs.uk PI: Dr Joanne Lewis, Dect 39355 Joanne.Lewis@nuth.nhs.uk

In set up PARADIGM Phase 2– Newly diagnosed glioblastoma, ineligible for radical chemoradiation. Olaparib plus RT vs Placebo plus RT 40Gy in 15# (age: ≥70; WHO performance status 0 or 1, 65-69; WHO performance status 0, 1 or 2 18 – 64; WHO performance status 2) Hope to be open by Spring 2018 Early Phase – Local Studies OPEN Micro RNA Assays in GBM Looking at 12-14 patients at various stages with GBM in order to look at profile differences between active disease and pseudoprogression. Project is to look at potential alternatives for assessing pseudoprogression accurately and to compare with possible imaging project at a later phase. Study part of biobank project – patient needs to fill form and give one blood sample. Expect to recruit via Oncology Clinic PI Joanne Lewis and Alistair Greystoke Glutamate Dysfunction in Glioma Supratentorial Glioma – Grand mal seizure history EEG/Blood and MRI/MRS studyTravel expenses covered – full day of testing. Trials Nurse Lead / Contact renae.stefanetti@newcastle.ac.uk PI Mark Cunningham mark.cunningham@newcastle.ac.uk

Version Control: Version: 1 Date: 27/09/17 Review: September 2020

U

Northern Cancer Alliance Expert Advisory Group

For insert name

TERMS OF REFERENCE

Chairperson:

insert name

Purpose: The primary purpose of Northern Cancer Alliance (NCA) Expert Advisory Group insert name is to provide cross organisational representation to ensure that all patients with cancer in the North East and North Cumbria receive equitable access to safe, evidence based and effective care. We will achieve this by holding each other to account for performance in this respect.

Membership: Core membership: Chair person Representative from each service provider organisation Patient and carer representative

Locality representatives Clinical Network administration support Clinical lead Northern Cancer Alliance

Additional membership to be determined by group.

Extended membership Palliative care representative Clinical research network representative TYA representative

Specific Role: To be the insert name expert advisory group to the Northern

Cancer Alliance. To support the delivery plan of the NCA. To develop and maintain up to date clinical guidelines. These

may in part be reference to nationally developed guidelines where available.

To review local data and metrics such as the cancer dashboard, and where possible use them to inform service improvement proposals.

To provide a forum for the sharing of good practice, discussing local and national issues and initiatives.

To ensure the views of patients and carers are taken into account in the planning, operation and evaluation of services including Patient Information material.

To lead rapid change, including the development and implementation of consistent standards within available

Version Control: Version: 1 Date: 27/09/17 Review: September 2020

resources. To ensure NCA clinical and strategic service development

issues are shared within member organisations. To ensure that clinical research is incorporated into the work

of the Group. To contribute to the Alliance needs assessment of education,

training and work force planning

Accountability: The tenure of the Chair will be 2 years with an option to extend for a further 2 years. (maximum tenure at discretion of group) A vice chair will deputise for the chair when necessary and normally succeed the chair when they step down To report to the NCA board through the Chair’s membership of the NCA Clinical Leadership group of which the Expert Advisory Group Chairs are members.

Frequency of Meetings:

Bi-annual meetings will be held with one inclusive of NCA site specific performance data.

Quorum: A minimum requirement for quorate to be achieved is attendance by 75% of core members who provide a service.

Admin: Action Points ☐ Minutes ☒

Ownership of Group Projects and Initiatives:

All projects, initiatives and outcomes will be owned by each member of the group that has taken part in the group project or initiative.

Ways of Working Together

All relationships must be handled in an open and transparent manner, which comply with the requirements of guidance issued by the Department of Health. Healthcare professionals have a responsibility to comply with their own codes of conduct at all times.

Communication Arrangements:

Minutes will be forwarded to members within three weeks. Agendas and minutes will be posted on the group page of the Northern England Clinical Network website. Items for the agenda should be received 7 days before the meeting. Inter meeting communication will be circulated by email from the NCA.

Declaration of Interest:

All potential or perceived conflicts of interest should be declared.

Page 1 of 5

Suspected Cancer in Adults Brain CNS

Date of referral: 3rd October 2017

Name: DOB: NHS No:

PLEASE FAX THIS REFERRAL TO CHOSEN PROVIDER Patients who are medically stable should be referred to CNS MDT below Newcastle: FAX – MDT Coordinator – 0191 282 5411 South Tees: FAX – MDT Coordinator – 01642 282 770 Those who are medically unstable should be admitted to their local hospital for initial treatment and transfered to the appropriate CNS team as an inpatient.

Patient has been informed that this is an urgent referral for suspected cancer The patient is available and willing to attend hospital for tests/appointment within 14 days The patient has been given the Fast Track leaflet

Hyperlink to: NICE GUIDANCE 2WW Patient Information Leaflet

Abnormal MRI/CT suspicious of brain cancer (please enclose report and where investigation was performed)

Meets criteria for MRI/CT below but no direct access to MRI from primary care (see below for local arrangements)

NIC

E G

UID

AN

CE

If MRI or CT with contrast is not available in primary care, then urgent 2 week referral to Neurology (Gateshead and Sunderland patients.)

Consider an urgent direct access MRI scan of brain (or CT scan with contrast if MRI is contraindicated to be performed within 2 weeks) Or Urgent 2WW referral if Direct access CT/MRI not available For Adults with progressive, sub-acute loss of central neurological function indications:

Progressive neurological deficit (e.g. unilateral weakness, heminanopia).

Progressive cognitive deficit or personality change (if atypical for dementia or mood disorder).

Consider an urgent direct access MRI scan of the brain (or CT scan with contrast if MRI is contraindicated to be performed within 2 weeks ) Or Urgent referral to NEW ONSET epilepsy clinic. Local guidance based on NICE CG137

Adults with new onset focal seizures (with or without secondary generalisation). NOT for: isolated headache with normal examination

This form should not be used for patients with metastatic spinal cord lesions

MRI If MRI suggests a brain tumour and the patient is unwell admit as emergency to your local hospital. If the patient is stable and MRI suggests a primary tumour refer to Neuro-oncology MDT using this form . If the patient is stable, has known primary cancer and MRI suggests metastases they should be referred as a 2WW to appropriate tumour specific clinic (such as chest clinic for patients with known primary lung cancer) or discuss with the patients specialist. Patients without a known primary cancer should have a clinical assessment including CXR (see MUO 2WW referral form for guidance) – where a likely primary site is suggested, refer as a 2WW to appropriate tumour specific clinic;

Name Miss Julie CDIngram

Date of Birth 01 Jan 1977 NHS Number: 505 211 2505

Page 2 of 5

where no likely primary is apparent, refer as a 2WW to your local MUO team (if they accept Primary care referrals) or if not the most likely primary tumour specific clinic. Link to: Advice and referral information for local CUP services If the MRI is normal the patient should be referred to either first seizure or neurology clinic.

This form should not be used for patients with metastatic spinal cord lesions

Reason for Referral (Please include the date of symptom onset and details of symptoms including neurological deficits and what they know.) The clinical information is essential to safe and effective care of your patient

Specific Past Medical history (including previous or existing malignancy, name of their oncologist,

disease status and if oncologist has been contacted NB: The full Medical History, Medication and any known allergies can be found below

Treatments started and effects: (e.g. steroids, ppi & anti-consultants, how long, include response)

Social Situation: (include who patient lives with and care needs)

Name Miss Julie CDIngram

Date of Birth 01 Jan 1977 NHS Number: 505 211 2505

Page 3 of 5

Additional Relevant Information:

Pe

rfo

rman

ce

Stat

us

0 Fully active

1 Cannot carry out heavy physical work

2 Up and about more than half the day and can look after yourself

3 In bed or sitting in a chair for more than half the day and need help in looking after yourself

4 In bed or a chair all the time and need a lot of looking after

Latest Blood Results: Blood Tests in the last month -REQUIRED

FBC Date Requested

Last 1month Last recorded Haemogolbin

WCC

MCV

Platelets

Ferritin

U+E Date Requested

Last 1month Last recorded eGFR

Na

K+

Urea

Creatinine

HBa1c

Values and Social Context

Latest BP: Smoking: Alcohol: Any non-therapeutic drug use information: * Details of any risk to others: * 26/01/16, Military veteran

Weight: Last 3recorded

Comment [EK1]: DO you want this information here?

Comment [EK2]: Page break

Name Miss Julie CDIngram

Date of Birth 01 Jan 1977 NHS Number: 505 211 2505

Page 4 of 5

Past Medical History, Medication and Sensitivities Date Active Problems Notes 17/03/14 Prolapsed intervertebral disc (X70Cg) 17/08/17 Migraine (F26..)

No active problems recorded Last issued Repeat Medication Dose Quantity Tuesday 22 Aug 2017 Meloxicam 15mg tablets (Somex Pharma) take one daily 30 tablet Tuesday 22 Aug 2017 Maxalt Melt 10mg oral lyophilisates (Merck Sharp & Dohme Ltd) take one as directed 12 tablet

No acute medication recorded26/01/16 Uses monitored dosage system

Date Allergy or Sensitivity Details 25/02/16 PHENOXYMETHYLPENICILLIN PHENOXYMETHYLPENICILLIN

Rash

Comment [EK3]: Page break

Name Miss Julie CDIngram

Date of Birth 01 Jan 1977 NHS Number: 505 211 2505

Page 5 of 5

Patient Details Name: Miss Julie CDIngram

Address: Gender: Female

DOB & Age: 01 Jan 1977 Age: 40

NHS Number:

505 211 2505

Patient Contacts:

Home: 0191 565 2323 Mobile:

Work:

Email: jingram@nhs.net (Unverified)

Carer/Advocate: The patient has confirmed the following person(s) should be included in correspondence –

Important contacts: *

Contact Consent:

Can leave message on answer machine Can contact by text Can contact by Email NB: Not all services use Texts or Emails as a method of communication.

Ethnicity: British or mixed British - ethnic category 2001 census

Interpreter: Yes Language: Main spoken language English *

Accessibility Needs:

Patient Accessible Information Need: Wheelchair access Accompanied by Carer

Other disability needing consideration *

Risks:

Vulnerable Adult Subject to Child Protection Plan 26/01/16Failed or difficult intubation Other: *

Referrer Details Name of Referrer:

* NECS GP Necs Gp Durham University Science Park Durham County Durham DH1 3YG

Accountable GP: Mrs Julie Ingram

Name of GP to address correspondence to, if different to accountable GP *

Surgery Tel No: 0191 333 6666 Surgery Email

Surgery Fax: 0191 388 8776 Date of Referral: 03 Oct 2017

2WW NE Upper GI/ HPB referral form – SystmOne Date: Sept 2017

If you have any problem with this form or suggested changes, please control & click here to open direct email. (NB: NOT TO BE USED FOR REFERRING A PATIENT)

To be completed by the Data Team (Insert Dates)

Received: / / First Appointment booked: / /

First Appointment date: / / 1st seen: / /

Specify reason if not seen on 1st appointment:

Diagnosis: Malignant Benign

Brain and CNS Northern England Expert Advisory Group

Three stratified pathways of aftercare and Recovery package

Due to risk of disease recurrence, self-management is rarely indicated for patients with CNS tumours. A combination of shared care and complex case

management shall remain within secondary care provision. The small number of low-risk patients (e.g. benign meningioma discovered as an incidental

finding) considered suitable for self-management will be given the choice of care pathways, and discharged to primary care given their informed consent.

The following initiatives aligned to the Recovery Package are currently available or being developed within the different Trusts.

Newcastle Upon Tyne Hospitals NHS Foundation Trust

Currently offered Future goal

Holistic Needs Assessment All patients and carers holistic needs are addressed by any member of the Neuro-oncology MDT involved in their care on a regular basis at key points on their pathway i.e. at diagnosis, during treatment, following completion of treatment, at disease recurrence and during best supportive care. At present this is not a dedicated holistic needs assessment but forms part of on-going consultations and telephone support. Prior to all neuro-oncology clinic appointments, patients are requested to complete an AHP screening tool to highlight and address new presenting problems and/or changing needs.

Clinical appointments dedicated to formal holistic needs assessment, initially post-surgery and then at key points in pathway. An audit of the AHP screening tool was completed, to determine its reliability and sensitivity of patients changing need resulting in new referrals. Currently planning to update the tool and considering combining with Nursing Holistic Needs assessment.

End of Treatment Summary Post- operative discharge summary sent to GP and Patient. Post-radiotherapy treatment summary sent to GP and patient.

Post-chemotherapy treatment summary to be sent to GP and patient. Work with GP lead in Newcastle to develop standardised documentation aimed at improving communication between primary and secondary care.

GP Cancer Care Review Not routine as patients remain within secondary care.

Not routine as majority of patients remain within secondary care.

Health and well being Way Ahead Day: Education day for patients recently diagnosed with high grade brain tumour. Topics include:

Introduction to neuro-oncology nursing and Allied Health Professional team,

Awareness and management of common symptoms, e.g. fatigue management, epilepsy.

Introduction to support services, incl: o Maggie’s (incl. benefits advice) o Day-hospice service (incl. complementary therapies and

support group), o Brain Tumour Charity o Brain Tumour Support Group

To be repeated every 6 months

Education day for patients with low grade tumours. Topics to include:

Introduction to neuro-oncology nurses, allied health professionals and Neuropsychologist,

Awareness and management of common symptoms, e.g. fatigue management, cognitive difficulties,

Introduction to support services, including: - Momentum Skills (Vocational rehabilitation), - Headway - RNIB – supporting people with sight loss - Action Epilepsy - Brain Tumour Support Group representatives - Brain Tumour Charity - Motorbility centre – Walkergate Park

To be repeated annually

Monthly Support Group available to all brain tumour patients: Monthly groups alternate between craft/social activities and workshops themes, which include:

Anxiety management and fear of recurrence (e.g. mindfulness and relaxation techniques),

Fatigue management,

Anger management,

Carers support,

Increasing valued activities and vocational rehabilitation support

Diet and exercise.

Strategies to overcome memory difficulties

Psychological resilience to support living with uncertainty

Positive Steps Programme/Focus on Living programme offered by St Oswald’s Hospice.

‘Shine’, a local support group for young adults living with a cancer diagnosis. Enhanced Supportive Care team now available at NCCC to all patients with high grade tumours. Team includes Palliative care nurses, physiotherapists, occupational therapists and access to Clinical Psychology.

Advice about, and access to schemes that support people to undertake physical activity and healthy weight management

Appropriate patients are referred onto local services for goal-orientated physiotherapy. This can vary from out-patient therapy, exercise programmes or community input depending on individual needs. Patients can attend nutritional classes via Maggie’s as required. If patients have complex nutritional needs, a referral to dietician is made. Patients can attend support group which discuss these topics further and signpost to available services Referral to local hospices for exercise programme.

Living With and Beyond Cancer

Pam Lee

Consultant in Public Health

LWBC

• Vision

• Aims

• Priorities

• Governance

• Delivery

LWBC Vision

Improve quality of life for people

living with and beyond cancer

LWBC Aims

• increased support to live well after

cancer

• better experience of cancer care

• developing consistent care across

the NCA

LWBC Priorities

1. Commissioning - develop toolkit to

• drive improvement

• support re-design of pathways after treatment:

– recovery package embedded in the patient

pathway

– stratified follow up pathways

LWBC Priorities (cont)

2. Workforce

• Education

• Increase staff capacity

• Enhance skills

LWBC Priorities (cont)

3. Patients

- Ensure all patients have named key worker

- Involved in redesigning pathways

LWBC Governance

• NCA Board

• LWBC Transformation Board

• LWBC Expert Ref Group

LWBC Delivery

• Locality groups

• Commissioning Forum

• Providers – trusts/practices/third

sector

LWBC

• Questions and discussion

Brain and CNS Patient Pathway - post MRI

Has the patient had

an MRI scan?

Does the patient have a

tumour?

Is the patient stable?

Is the patient

over 24?

Yes

Yes

Yes

No

Refer to MDT at NCLE or JCUH

Email: Fax:

Yes No

Brain & CNS NSSG April 2016

Does the patient have a tumour

Admit to local hospital.

When patient stable refer to MDT at NCLE or JCUH

Under 18 Refer to Paediatrics 19 – 24 years refer to Teenage & Young Adults (TYA) MDT

Is the patient stable

? Does the Patient have a tumour

Remove from Cancer pathway

1

Meeting: Brain and CNS NSSG Date: 28.4.17 Time: 9.00 – 12.00 Venue: Evolve Business Centre Present: Caroline Barber- Miller, Occupational Therapist, South Tees CB Jenny Collins, Physiotherapist, South Tees JCo Emily Davies, Neuro oncology support sister, South Tees ED Jean Gardner Patient & Carer Rep NESCN JG Serena Hartley, Neuro-Oncology Physiotherapist, South Tees SH Kath Jones, Network Delivery Lead, NESCN KJ Phil Kane, Consultant Neurosurgeon, South Tees PJ Joanne Lewis Clinical Oncologist Newcastle Hospitals JL Emily Rees, Neuro-oncology Support Sister, S Tees ER

Chris Tasker, GP Cancer Lead, NESCN CT Anil Varma, Consultant Neurosurgeon, South Tees AV Tracey Vernon, Occupational Therapist, Nuth TV Sophie Williams, Clinical Neuropsychologist Newcastle SW In Attendance Claire McNeill, Quality Surveillance Co-ordinator CM Apologies: Penny Williams, Research Delivery Manager PW Jacqui Stuart Nurse Specialist Palliative Care, Newcastle JS Pauline Sturdy, Macmillan Neuro-Oncology Specialist Nurse,

South Tees PS

David Scoones, Consultant, South Tees SC John Crossman Neuro Surgeon Newcastle Hospitals JCr Gill Hendry Macmillan Neuro-onc Specialist Nurse South Tees GH Sarah Lawless SL Tony Branson, Medical Lead, Cancer Alliance TB

MINUTES 1. INTRODUCTION Lead Enc 1.1 Welcome and Apologies AV welcomed all to the meeting, apologises as listed above.

1.2 Declaration of conflict of Interest No declarations of interest were made.

1.3 Minutes of the previous meeting 11.11.16 Enc1

Minutes agreed as a true and accurate record.

1.4 Matters arising Neuro Pathologist South Tees Vacancy Update

AV nothing has changed since the last meeting. The previously ring fenced funding appears to have vanished and has now been used up by general pathology. SC has been informed that the post is not being replaced. Group requested a letter be raised by the alliance concerning

2

the risk and potentially a breach of specialised commissioning contract. Alliance to speak to specialised commissioning to discuss. Chair to raise letter and send to CM. KL to request update from TB to see if a digital solution was discussed with the Histopathology CCG.

KJ AV CM

Radiology CCG re Diagnostic

JC to send document to CM to incorporate into the clinical guidelines once agreed with Radiology.

JC

2WW referral update

CT advised the 2ww referral has been in place for one year. Currently asking for feedback on how the system is working. PK advised a number of incidental findings are being referred on a 2ww referral and the agreed process is the Trust has to contact the practice. PK asked if the practices could have a dedicated telephone line so trusts can contact practices easily. CT advised a number already exists but the problem is that trusts aren’t advised of this number. CT asked if it would be possible for more guidance on the radiologist’s reports. If radiologist suspected malignancy, wording equivalent to seek advice-this is a 2ww situation. This should reduce 2ww significantly. 2ww referrals would only be expected on one of the following - high grade tumours/metastatic tumours /significant mass effect from tumours. KJ to take to radiology group to discuss and feedback will be provided via email.

KJ

Post MRI Referral pathway

Guidance documents for GPs needed amended. JC looking into this. AV will contact JC to update.

AV

62 Day pathway

Amendments made and sent out for agreement. Document therefore endorsed and should be available on our website. KJ to check it is on the website.

2. AGENDA ITEMS

2.1 Cancer Alliance Update The Cancer Alliance covers 3 STPS and the STP plans are

linked into the alliance delivery plan and also locality groups plans. KJ advised The alliance now has improved links with commissioners.

2.2 Cancer Transformation bids

3

.KJ discussed the attached presentation for bids regarding;

• Early Diagnosis • Recovery package and stratified follow up

The Northern Cancer Alliance was successful in stage 1 for early diagnosis and successful in stage 2 in the recovery package. KJ updated on;

Pathology – academy to improve long term staffing issues and sharing information may eventually provide digital solutions.

Radiology – add on to PACS systems to ensure images can be viewed across sites and eventually look to have an academy of radiologist. Look at training to upskill.

Primary care post.

2.3 Newcastle Radiosurgery Programme Presentation Presentation provided by JL. Group discussed selection of

patients and also discussed the need to change opinions regarding treatment options. AV asked if JL could present at South Tees for benefit and awareness of the skull base neuro surgical team and the oncologists.

AV

2.4 South Tees Local Presentation – Phil Kane

PK discussed his presentation regarding too many staging CT scans being undertaking in solitary high-grade tumours and to consider if this service provision could be improved. Findings show unnecessary scans are taking place which are increasing workload, wasting resource and also affecting delays. Group discussed how to prevent unnecessary scans and to consider education to prevent this. CT discussed some MDTs automatically rescanning advising scan is not suitable. KJ asked if this presentation could be discussed at the Radiologists Expert Advisory Group. Unable to provide copy of the presentation at the moment as it is accepted for presentation in another conference scheduled in the near future.

KJ

2.5 Clinical Guidelines CM to send index to AV to confirm who is completing each

section. AV to complete and return to CM. CM to send word copy out to group. All to review and send updated copy to CM by 23 June 2017. CM to collate and send back out to group to

CM

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endorse via email. 2.6 Peer Review / Quality Surveillance

Concerns expressed at the last meeting regarding;

maintaining equity of access for patients in North East and Cumbria region

Understand the evidence related to specific number of 10 patients/ per surgeon per year

Skull base quality indicators have been removed from QSIS as these have not yet been agreed by the Clinical Reference Group. Awaiting for further update. CT updated on the ongoing Cancer Alliance work regarding MDT effectiveness. Group discussed the amended quality surveillance measure regarding 2 MDT meetings per month for Pituitary. The Quality Surveillance measures appear to have changed without consultation. Group discussed the fact the IOG had not changed and could not see a clinical issue as to why this had changed. Group agreed to remain at 1 MDT per month.

3. STANDING ITEMS 3.1 Living with and beyond cancer Follow up for low risk patients discussed and CT discussed

the need for change in practice for these patients to be moved back to GPs with quick route back in if needed. Framework needs to be introduced into GP Practice to review these patients annually before we consider this Small number of patients involve. Group to review once framework is in place.

Follow Up

Both North and South services provide patient events. SW advised due to issues the event planned had to be rescheduled, which should be held soon. South Tees hold smaller meetings with more individual attention to patients. Document to be updated and brought to the next meeting. SW to send to CM in advance of meeting

SW

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3.2 Audit 1. Rehab framework audit – Presentation .Access to rehabilitation for patients discussed. PK discussed

the lack of neuro science referral. Critical reflections and areas for Improvement are detailed below. Newcastle

Main delay is with onward inpatient referrals from the ward.

Longer delays for specialist neuro inpatient rehab than for generic inpatient rehab.

Lack of neuro-specialist AHPs in community teams. Specialist neuro teams often do not accept patients above a WHO grade 1.

Generic intermediate care teams in the community have only small provision of specialist AHPs. These teams often respond quicker than specialist teams.

South Tees

Delay with referral from the ward to neuro in-patient rehabilitation

Patient delay onto neuro-rehabilitation due to barrier nursing – Infection control restrictions

Increasing number of elderly patients 75 + age range

Patients without rehab need – Approx. 50% - Promote physical activity to improve QOL

Access to community teams not an issue but there is a lack of specialist neuro and palliative AHPs in some areas.

2. National Acoustic Neuroma Audit - update

To be presented at the next meeting. AV advised of the central IT issues that have delayed input. There is no national published date. Patients are being included in the national audit from South Tees. To check with JC about inclusion from Newcastle.

AV

3.3 Clinical Governance Issues As discussed 3.4 Any other business

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Membership KJ advised the group by Helen Hill (from a Brain Tumour Charity) asking the group if she could be added to distribution list, to view any minutes. Group discussed and reluctantly declined the request as group felt minutes were available via the web. Both centres already link well with her. Group were concerned about other charities being excluded and wanted to ensure the group remain neutral and did not show any favouritism.

Sarcoma guidelines

Group discussed the sarcoma guidelines and the relevance

the Brain and CNS group. AV to contact JL to discuss moving relevant sections into the Brain and CNS Clinical Guidelines where indicated.

AV

Imaging upgrade

CT informed the group of changes to Lung patients CXR being upgraded to CT and if that would be applicable to imaging relating to Brain and CNS patients. PK agreed there is a need to make improvements to the pathway in the future.

Outcome Data

Linda Wintersgill will be attending the next meeting to present

outcome data.

Learn and Share event

The next meeting will be a learn and share event and lunch

will be provided. CM to ensure room booking expanded. If anyone has any other audits to present at the next meeting please let CM know as soon as possible.

CM

All

Meeting dates Friday 3 November 2017, 9.00 -12.00 Evolve Business Centre 4. MEETING CLOSE Contact Claire.mcneill@nhs.net tel 01138252976

1

Meeting: Brain and CNS NSSG Date: 11.11.16 Time: 9.00 – 12.00 Venue: Evolve Business Centre Present: Tony Branson. Medical Director, NESCN TB Jenny Collins, Physiotherapist, South Tees JC John Crossman Neuro Surgeon Newcastle Hospitals JCr Emily Davies, Neuro oncology support sister, South Tees ED Jean Gardner Patient & Carer Rep NESCN JG Serena Hartley, Neuro-Oncology Physiotherapist, South Tees SH Gill Hendry Macmillan Neuro-onc Specialist Nurse South Tees GH Abhijit Joshi, Neuropathologist, Newcastle AJ Kath Jones, Network Delivery Lead, NESCN KJ Phil Kane, Consultant Neurosurgeon, South Tees PJ Joanne Lewis Clinical Oncologist Newcastle Hospitals JL Bev North, Nurse Specialist Neuro- oncology BN

10.25 David Scoones, Consultant, South Tees SC

Jacqui Stuart Nurse Specialist Palliative Care, Newcastle JS Anil Varma, Consultant Neurosurgeon, South Tees AV Tracey Vernon, Occupational therapist, Newcastle TV Penny Williams, Research Delivery Manager PW In Attendance Claire McNeill, Peer Review Co-ordinator CM Linda Wintersgill , Information &Data Manager, Cancer Alliance LW Apologies: Emma Lethbridge, Newcastle EL Sophie Williams, Clinical Psychologist, Newcastle Hospitals SW Andy James, Consultant, Newcastle AJ Chris Tasker, GP Cancer Lead, NESCN CT

MINUTES 1. INTRODUCTION Lead Enc 1.1 Welcome and Apologies JC welcomed all to the meeting, apologises as listed

above.

1.2 Declaration of Interest No declarations of interest were made.

1.3 Minutes of the previous meeting 13.05.16 Enc1

Minutes agreed as a true and accurate record.

1.4 Matters arising CNS Carlisle

Working well with an additional post is about to be filled. Neuro Pathologist South Tees Vacancy Update

2

Issue still outstanding DS is a part time neuro pathologist and a second pathologist left, which has resulted in lack of cover for DS and provision of neuropathology. South Tees have confirmed there is insufficient work load for a full time post and there is also an issue regarding lack of neuro pathologists to recruit. DS advised Newcastle have kindly covered paraffin sections when required, but are unable to provide an intra-operative service. TB to take issue to Histopathology CCG to see if a digital solution is available. Update to be provided at the next meeting.

TB

Radiology CCG re Diagnostic

JC to send document to CM to incorporate into the clinical guidelines once agreed with Radiology.

JC

2WW referral update

There was a query regarding Cancer of Unknown primary.

KJ confirmed the CUP 2ww is now on hold as not all trusts can provide a CUP service. Chris Jones at Newcastle has agreed to pilot the new form. KJ to contact CJ for an update to be provided at the next meeting.

KJ

TYA MDT feedback

BN confirmed the TYA MDT undertakes an informal holistic

needs assessment on all patients. No further action is required.

Post MRI referral pathway

JC discussed the attached document providing guidance

for GPS after a patient has an MRI scan. Suggestion made to insert “or new” into the first bullet point. Amended copy to be recirculated with minutes, comments to be sent to CM by 12.12.16, if no comments received document will be endorsed by the group.

All

62 Day pathway

KJ asked all to review the pathway and specifically

diagnostics that may have changed. Pathway to be circulated for comments. All comments to be sent to

3

kath.jones3@nhs.net

2. AGENDA ITEMS

2.1 Genetic and Molecular Testing Group discussed the genetic and molecular testing

currently in place. Newcastle is looking to undertake in house. PK expressed concerns regarding the target referral to diagnostic in 28 days and the delay incurred when sending samples off. TB advised this would impact on the pathway but not the diagnostic of a tumour being confirmed. Immunohistochemistry forms part of diagnostic decision and treatment discussion. Group agreed there appears to be parity in use across the region. Group discuss costs and suggested it may be cheaper if South Tees’ samples could be sent to Newcastle to be processed regionally.

2.2 WHO Guidelines for classifying Brain and CNS

Tumours

As above 2.3 Three stratified pathways of aftercare Document discussed. DN advised there is still a need to

formally embed this in practice as it is still an informal process. Group discuss the challenge of a clinic designated to holistic needs. Currently all agreed the needs of patients are document and acted on. BN advised Newcastle plan to hold an educational day within the next 6 months. PK queried if the STPs (sustainability Transformation Pathways) would take on the holistic needs assessment going forward. TB advised this is not known. TB provided network update under agenda item 2.4 to update on the current position.

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2.4 Network Update

The Cancer Taskforce Strategy (2015) outlined 6 priorities; • prevention • early diagnosis • patient experience • living with and beyond cancer • high quality and modern services • commissioning provision and accountability

Cancer Alliances are seen as one of the vehicles to implement these priorities working across meaningful geographies built around patients flows. The aim of the Cancer Alliance is to improve outcomes and patient experience by bringing together all local partners to plan and provide sustainable high quality integrated services. The Northern Cancer Alliance will be the same geography as the current cancer network, will use current network staff to provide some infrastructure and will cover 3 STP footprints – Northumberland, Tyne & Wear, West, North & East Cumbria and Durham, Darlington, Tees, Hambleton, Richmondshire and Whitby. The Cancer Network are currently conducting a series of meetings with Commissioners and Providers to develop a Memorandum of Understanding and to consider the structure and governance processes. The first Board meeting takes place in November and the national team have been advised of the Northern Cancer Alliance geography and leadership team.

• Chair - Mr Andrew Welch - Medical Director, Newcastle Hospitals

• Alliance Manager – Mrs Alison Featherstone • Clinical Lead - Dr Tony Branson

The national team are expected to allocate further guidance and some resources in Oct/Nov. Objectives of the cancer alliance will be aligned with the STPs

2.5 Peer Review / Quality Surveillance Update The network have had no measures for the Quality

Surveillance Process for quite some time and the new MDT measures contain very few points which need to be network agreed. This coupled with the reduction in budget and restructure of the Network, means we are no longer able nor required to support this process at a network level.

5

However we will continue to support many of the network groups to meet. If there are any Trust measures that require discussion at the network meetings it will be the trusts responsibility to ensure they advise us in advance of the meeting to add this to the agenda The network steering group discussed the matter of agreed clinical guidelines (operationalising national guidance) and patient pathways at the last steering group meeting. It was agreed that these should be regionally agreed and that the process for this should be taken forward by the new Northern Cancer Alliance. Group discussed the need for the cancer alliance to be involved in ensuring quality of services. TB advised this would be address in the information and data presentations looking at outcome data.

2.6 Skull Based Service

The Quality Surveillance National team have circulated draft indicators for consultation. The new indicators provide national agreed structure, process and outcome indicators, both qualitied and quantitative. Some of the changes introduced are detailed below;

Minimum numbers of patients have been introduced.

Proton Beam pathways

Interactive pathways with other services. JC discussed the need to operate in a more co-ordinated way with other providers in the region. AV discussed the numbers of patients per surgeon suggest only 5 centres would be required nationally. Concerns were expressed that these new measures would result in this region no longer able to provide this service. TB discussed the importance of outcome data and if this was in line with national outcomes there would be good argument for this service to remain. Group comments detailed below to be fed back to consultation panel.

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Concerns

We wish to maintain equity of access for patients in North East and Cumbria region

Understand the evidence related to specific number of 10 patients/ per surgeon per year

And understand the resource implications related to this draft guidance (increase in frequency of MDTs and the attendance of core members)

We would welcome an opportunity to debate these concerns in a national forum. CM to email National Team on behalf of the chair.

CM

3. STANDING ITEMS 3.1 Performance reporting LW presented the performance reports which will be sent

via email, with a covering summary document providing additional information. LW asked for any comments or suggestions to include additional information to be sent to l.wintersgill@nhs.net Group discussed the importance of 1 and 2 years survival data. JL queried classifications used for malignancies, LW to confirm. Discussion if any information held regarding the burden on carers and how supported carers felt. TB suggested the trust would need to collect this data in a useful format or look to obtain nationally as it currently is not available.

LW

All

LW

3.2 Clinical Trials PW discussed the attached presentation.

JL queried the accuracy of the figures quoted. JL to forward details directly to PW to update. JL advised Newcastle were looking at the following trials;

• ABT44 • TRAVECTATIN • Local studies • Micro R&A

PW will email contact details to JL to ensure the trials open at Newcastle can be recorded, which would allow some support to be provided.

JL

PW

Enc 2

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2 3.3 Living with and beyond cancer

To be discussed at the next meeting

3.4 Patient and Carer Group discuss the role of locality groups to feed back trusts

issues, if these were not resolved they would then be taken forward by the cancer alliance.

3.5 Audit 1. Rehab framework audit – proposal update Framework started and data now collected.

Both Trusts to present at the next meeting.

2. National Acoustic Neuroma Audit - update

Both sites currently entering data with the final report

due at end of last year.

3. Local data Newcastle

radiosurgery programme to be presented at the next meeting – JL to present

JL

South Tees May have a local audit .PK to confirm

PK

4. Learning Event / Audit day- 5. South Tees confirmed the date as March 17 at the

education centre at James Cook University Hospital. Programme will include community/ secondary care

All

3.6 NICE Guidelines None 3.7 Clinical Governance Issues

Neuro Pathologist South Tees Vacancy as discussed above.

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3.8 Any other business

AHP team at Newcastle BN updated on changes to the team members. BN to send details to CM to update distribution list. Chair TB thanked JC for all his hard work over the term of his chairmanship of the group. JC thanked the group for all the support they have given him.

BN

3.9 Meeting dates Friday 28 April 2017, 9.00 – 12.00, Evolve Business Centre

Friday 3 November 2017, 9.00 -12.00 Evolve Business Centre 4. MEETING CLOSE Contact Claire.mcneill@nhs.net tel 01138252976

Brain and CNS Northern England Expert Advisory Group

Three stratified pathways of aftercare and Recovery package

Due to risk of disease recurrence, self-management is rarely indicated for patients with CNS tumours. A combination of shared care and complex case

management shall remain within secondary care provision. The small number of low-risk patients (e.g. benign meningioma discovered as an incidental

finding) considered suitable for self-management will be given the choice of care pathways, and discharged to primary care given their informed consent.

The following initiatives aligned to the Recovery Package are currently available or being developed within the different Trusts.

James Cook University Hospital

Currently offered Future goal

Holistic Needs Assessment All patients and carers holistic needs are addressed by any member of the Neuro-oncology MDT involved in their care on a regular basis at key points on their pathway i.e. at diagnosis, during treatment, following completion of treatment, at disease recurrence and during best supportive care.

Ensure assessment of holistic needs is formally recorded at the Neuro-oncology MDT. Develop the role of the Cancer Care Coordinator to complete the Holistic Needs Assessment form which will then be reviewed by the Specialist Neuro-Oncology Nurses.

End of Treatment Summary Post- operative discharge summary sent to GP and Patient. Post-radiotherapy treatment summary sent to GP and patient.

Post-chemotherapy treatment summary to be sent to GP and patient.

GP Cancer Care Review Not routine – patients remain within secondary care.

Not routine – patients remain within secondary care.

Health and well being All patients with a meningioma, low grade and high grade tumours have a multidisciplinary assessment depending on individual needs to address individual goals in terms of health and well- being and maximising quality of life. Patients are provided with information and sign-posting to services tailored to individual needs at several

Pre-op and post op multi-disciplinary clinics for low and high grade tumours to address individual issues and facilitate self-management, at a “one stop shop” Offer group education day for low and high grade

points in their pathway. Information provided at these points may include

Individual exercise programmes

Sign-posting to specific exercise sessions

leisure activities in the community

Coaching programmes

Fatigue management

Carers support

Vocational support

Anxiety/Stress management

Psychological support via Neuro-oncology Clinical Psychologist.

Management of cognitive issues

Management of speech, language or swallowing difficulties

Pre-op multidisciplinary meningioma clinic to provide baseline assessments and to identify any difficulties, to address needs post-operatively and in the longer term. Quality of life measures are performed pre and post op to determine if changes have been made with the interventions. Ongoing issues are signposted/referred to internal and external services. Nurse-led meningioma clinic providing review and support of patients. Patients can attend Health and Well-being events hosted by the Trust across the South Tees catchment area– Organised by the Hope programme.

tumours and their carers to offer the opportunity of peer support and information to assist in the management of symptoms Development of Robert Ogden centre at the Friarage Hospital will provide enhanced Macmillan support services for patients in the Hambleton and Richmond area. Occupational Therapist to hold a bolt on clinic for patients with low grade Tumours and Meningiomas who require one to one interventions re Survivorship issues. Re-establishment of the South Tees Survivorship steering group to explore future developments across both Hospital sites.

Links with the, Headway charity and the Brain Tumour Charity exist. The AHP’s assist with service development within the Brain Tumour Charity Patients are Referred to SHINE, a support group for young people and adults living with a cancer diagnosis.

Advice about, and access to schemes that support people to undertake physical activity and healthy weight management

Patients can access goal-orientated individualised physiotherapy exercise programmes depending on need as an out-patient or a home visit or through referral to local services. Patients can be referred to a 12 week cancer rehabilitation scheme in a leisure centre setting, to a GP exercise on prescription scheme, coaching scheme (MY Life) to facilitate self-management and improve quality of life etc. Patients can be referred to Dietwise CIC for a programme looking at mood and food.