Essex and Barking, Havering & Redbridge Supra-Network. In-patient and Community Neurological Rehabilitation Operational Policy

Transcription

1 Essex and Barking, Havering & Redbridge Supra-Network Brain & CNS NDSG In-patient and Community Neurological Rehabilitation Operational Policy Version 1.3 March 2012 Review Date March 2013 Author Kate Patience Macmillan AHP Lead Essex Cancer Network 1 V 1.3

2 Brain & CNS NSSG In-patient and Community Neurological Rehabilitation Operational Policy Agreement Cover Sheet This Constitution has been agreed by: Position: Name: Chair of the Brain & CNS NSSG, Trust Clinical Lead Dr K Madhavan Organisation: Date Agreed: 21 st March 2012 Southend University Hospital NHS Foundation Trust Position: Name: Chair of the Network Board Sheila Bremner Organisation: Date Agreed: 15 th May 2012 Position: Name: Neurorehabilitation Lead Kate Patience Organisation: Essex Cancer Network Date Agreed: 21 st March 2012 Position: Name: Trust Clinical Lead Dr Hafiz Algurafi Organisation: Basildon Date Agreed: 21 st March 2012 Essex Cancer Network 2 V 1.3

3 Position: Name: Trust Clinical Lead Dr Alan Lamont Organisation: Date Agreed: 21 st March 2012 Colchester Hospital University NHS Foundation Trust Position: Name: Trust Clinical Lead Dr Vivienne Loo Organisation: Mid Essex Hospital Trust Date Agreed: 21 st march 2012 Essex Cancer Network 3 V 1.3

4 Title: Neurological Rehabilitation Operational Policy incorporating guidelines for the referral and management of Brain & CNS cancer patients within regional and local in-patient and community rehabilitation facilities. Author: Kate Patience Macmillan AHP Lead Document Owner: Essex Cancer Network Swift House Hedgerows Business Park Chelmsford Essex CM2 5PF This document: March 2012 Essex Cancer Network 4 V 1.3

5 CONTENTS Contents Page 1. Introduction 6 2. Background 6 3. Description of the service Purpose and objectives Who the service is for (service users) Equality and diversity (Inclusion) 8 4. Rehabilitation Pathway 8 5. Operational details about how the 10 service will be delivered 5.1 Neurorehabilitation Team Members Neurorehabilitation Facilities within 11 ECN 5.3 Referral process Service provision Key working relationships Equipment provision Communication User Involvement Reference List Appendix 1 ECN Rehabilitation Pathway 19 for Brain & CNS Tumours (including MSCC) Essex Cancer Network 5 V 1.3

6 1.0 INTRODUCTION 1.1 In line with the Calman Hine report (1995), NHS cancer Plan (2000), NICE Improving Supportive and Palliative Care for Adults with Cancer (2004), NICE Improving Outcomes Guidance (IOG) for People with Brain and other CNS Tumours (2006), Cancer Reform Strategy (2007), Metastatic Spinal Cord Compression IOG (2008) and Improving Outcomes: A Guide for Cancer (2011) the purpose of this document is to provide clarity on the rehabilitation of patients with Brain & CNS tumours in Essex Cancer Network (ECN). The Essex Cancer Network Board is asked to formally approve this document on behalf of all its constituent organisations thereby ensuring uniformly high quality in primary, secondary and tertiary rehabilitation centres for all its patients, compliant with national guidance. 1.2 The Brain & CNS Peer Review Measures (11-1A-206k, 11-1D-111k) require a network wide operational policy for accessing neurorehabilitation facilities both in the acute and community setting, agreed by each locality. The Macmillan AHP Lead for the Essex Cancer Network (Kate Patience) worked with the Brain & CNS Network Site Specific Group and Rehabilitation Board to develop this document. 1.3 The AHP Lead is also a specialist oncology physiotherapist (Band 7) in North East Essex and is the area lead for neurorehabilitation (Peer Review Measure 11-1C-111k). The area lead for neuro-rehabilitation is a member of the CNMDT and NSSG and has the responsibility of overseeing and signposting access to acute, specialist in-patient neurological/spinal rehabilitation and community neuro-rehabilitation services for patients with brain and CNS tumours. 2.0 BACKGROUND 2.1 The ECRIC figures for the Essex Cancer Network ( ) show the annual average incidence of brain & CNS tumours was 163. Though primary brain tumours account for less than 2% of UK cancer diagnoses, more people under 40 die from a brain tumour than any other cancer. 2.2 The NICE IOGs for people with Brain & other CNS tumours (2006) and Metastatic Spinal Cord Compression (2008) state that patients with such tumours should have rapid access to Allied Health Professional (AHP) assessment & rehabilitation, including specialist neurorehabilitation where appropriate, as their condition changes. This includes the immediate access to, or provision of, specialist equipment as necessary. 2.3 The document will also cover neurological rehabilitation for patients requiring input as a result of paraneoplastic syndrome, a rare but potentially disabling condition from a variety of tumour sites which can cause a wide range of neurological deficits. 2.4 Cancer and its treatment can have a major impact on patients ability to carry on with their usual daily routines. Activities that most people take for granted, such as moving, speaking, eating, drinking and engaging in sexual activity, can all be severely impaired. 2.5 Tumours of the brain and CNS (including malignant spinal cord compression) can be highly complex due to poor prognosis, extent of disability, and experiences of long-term progressive, physical, cognitive and emotional problems. It is vital that consideration is given to the impact that such a diagnosis has and the wide ranging needs and support required throughout this period of care for both the patient and their support network. This requires an AHP workforce that is skilled in both physical and emotional issues to deal sensitively and competently with patients and their families/carers. Essex Cancer Network 6 V 1.3

7 2.6 Some tumours carry a good long-term prognosis, yet a patient s ability to live and function independently may be compromised and they may require ongoing rehabilitation services for a prolonged period of time. 2.7 Access to neurorehabilitation services should not be based on diagnosis or prognosis, but on the needs of the patient, rehabilitation potential and patient goals. Rehabilitation should be provided in the best location for the patient, whether that is an in-patient, out-patient or community setting. Specialist rehabilitation units should be considered if appropriate. The commissioning teams need to work closely with social service departments, primary, secondary and tertiary care providers to ensure that this aspect of the pathway is properly financed to meet patient needs in a timely manner. This should include rehabilitation for any signs and symptoms caused by the tumour and/or side effects from any treatments (including steroid induced myopathy). 2.8 Patients with spinal cord tumours should have the opportunity to undergo intensive rehabilitation in a specially adapted unit such as a spinal injuries unit, in order for them to achieve their maximum functional potential. Commissioners should ensure that patients with spinal tumours can be admitted to such units and that the treatment programme is appropriate to their needs. 2.9 The NICE Supportive and Palliative Care IOG describes a recommended model of rehabilitation assessment and support, with 4 levels of training and expertise for AHP groups. Level 1 indicates an assistant grade, Level 2 would describe generalist or rotational qualified staff, Level 3 is experienced AHPs with a basic level of cancer training, and Level 4 are advanced practitioners working solely or predominantly within cancer or palliative care with higher level training in the rehabilitation needs of people with cancer. The Brain & CNS IOG recommends that patients with brain and CNS tumours should be seen by Level 3 or 4 practitioners due to the complexity of the disease Cancer rehabilitation is gaining in profile, with developments such as the National Cancer Survivorship Initiative (NCSI) and NCAT Rehabilitation Pathways highlighting the need for intervention to improve quality of life and general health as much as possible. Studies have shown that functional improvements for people with brain and CNS tumours are comparable to rehabilitation effects for people after CVA and Traumatic Brain Injuries Rehabilitation in oncology should be offered from pre-diagnosis through to end of life and at all key stages in-between, as determined by the functional problems encountered by the patient and/or carer/family. Rehabilitation in oncology and palliative care aims to be: Preventative reducing the impact of expected disabilities and assistance in learning to cope with any disabilities Restorative returning the patient to pre-illness level without disability Supportive in the presence of persistent disease and the continual need for treatment, the goal is to limit functional loss and provide support Palliative further loss of function, put in place measures which eliminate or reduce complications and to provide support (symptom management) (Dietz, 1980) 2.12 Cancer rehabilitation attempts to maximise patients ability to function, to promote their independence and to help them adapt to their condition. It offers a major route to improving their quality of life, no matter how long or short the timescale. It aims to maximise dignity and reduce the extent to which cancer interferes with an individuals physical, psychosocial and economic functioning. (Macmillan AHP in Cancer Care Evidence Review, 2011) 2.13 The rehabilitation team also play a key role in the discharge planning of patients from acute and tertiary services, and this work should be commenced from admission and be co-ordinated by a named key worker. For many patients it may be appropriate for AHPs to be key workers, both in the acute and community setting, to ensure continuation of care. Essex Cancer Network 7 V 1.3

8 3.0 DESCRIPTION OF THE SERVICE 3.1 AIMS AND OBJECTIVES This Operational Policy has been developed to ensure equality of rehabilitation services across the Essex cancer Network for people with primary and secondary brain tumours, central nervous system tumours, metastatic spinal cord compression and neurological disorders as a result of Paraneoplastic Syndrome The Brain & CNS NSSG and the Rehabilitation Board are to ensure that all patients diagnosed with Brain & CNS tumours and Metastatic Spinal Cord Compressions are managed within an appropriate multidisciplinary care pathway as described in this document. The NSSG and Rehabilitation Board will ensure that there is continuous improvement in service delivery including the rehabilitation pathway through their work plans All patients must be assessed for their rehabilitation needs and referred or signposted to appropriate services, regardless of location and stage on the cancer pathway. This document outlines the processes to be followed in ensuring correct rehabilitation for patients is accessed and delivered. 3.2 SERVICE USERS This policy covers all patients with tumours of the brain and central nervous system, and patients with metastatic spinal cord compression or neurological damage from paraneoplastic syndrome from any tumour site All grades of tumours are included within this operational policy, as people with low grade tumours may require neurorehabilitation for any neurological deficits caused by the tumour and/or treatments given and their rehabilitation needs must be taken into consideration All stages of the cancer pathway are covered by this policy, as patients may require intervention from diagnosis, through treatment and into the survivorship stage, which may be a curative or palliative pathway. This would include vocational rehabilitation where appropriate This document should be used by commissioners, cancer clinicians, CNSs, AHPs and the extended rehabilitation team to ensure prompt and appropriate referral to rehabilitation services which may require individually commissioned packages of care and equipment depending on the circumstances of each person. 3.3 EQUALITY AND DIVERSITY Neurorehabilitation facilities should be open to patients whose rehabilitation needs are caused by their tumour or its treatment and they should not be excluded from specialist services due to a cancer diagnosis or because of a palliative condition Due to the range of communication and mobility difficulties which may be caused as a result of brain and CNS tumours, services must ensure they offer a variety of methods for communication and accessibility to ensure that people are able to make appointments and access services. 4.0 REHABILITATION PATHWAY 4.1 The Essex and Barking, Havering & Redbrige (BHR) Supra-network Neuroscience MDT is hosted by BHR. The Essex Cancer Network MDT (CNMDT) is hosted by Southend University Hospital Foundation Trust. The Essex CNMDT is associated with the Neurosciences SMDT and Neurosurgical SMDT at Queens s hospital Romford and patients are pulled from this list to be discussed at the CNMDT to ensure continuation of care. All patients should be referred to the Essex Cancer Network 8 V 1.3

9 CNMDT for the supervision of the non-surgical aspects of their care including rehabilitation and specialist palliative care services (see diagram below). 4.2 The Neurosurgical MDT should have an AHP agreed as having responsibility for liaison with neurorehabilitation services in attendance as a core member (11-2K-201). This should be specified in the job plan of the person designated to cover this meeting, and they should have a named representative to cover when they are not able to attend. This person is responsible for ensuring that rehabilitation needs are discussed in the meeting and signposts to appropriate AHP services. 4.3 The cancer network MDT is the coordinating team for the non-surgical management of most adult patients with CNS tumours. The Brain & CNS Peer Review measures (11-2K-101) state that there should be an occupational therapist, speech and language therapist and a physiotherapist with time specified in their job plan for the care of patients with a CNS tumour as part of this CNMDT. 4.4 The CNMDT are responsible for nominating and recording a key worker to act as point of contact for patients, their relatives and carers. This should be agreed with the patient, their relatives and carers. The CNMDT will also and agree who is responsible for organising rehabilitation referrals. 4.5 The CNMDT member nominated responsible for referrals to rehabilitation services will enaure that referrals are completed and sent within 24 hours of the CNMDT meeting. A record of all referrals should be kept on the MDT proforma (outcomes sheet). 4.6 The CNMDT should refer to the Essex Cancer Network Rehabilitation Pathway for People with Brain and CNS Tumours for a list of triggers to referrals to the main rehabilitation AHP groups (Physiotherapy, Occupational Therapy, Speech and Language Therapy, Dietetics and Lymphoedema Therapists) to ensure that patients are referred to the appropriate services. This pathway can be found as appendix 1. A list of contact numbers for local teams can be found under section 5.6 of this document or within the AHPs in Cancer Service Directory. Essex Cancer Network 9 V 1.3

10 Supportive and Palliative care (Access throughout) Southend Hospital Initial presentation Broomfield Hospital Colchester Hospital Neurosciences SMDT at Queens Hospital, Romford Essex MDT Basildon Hospital Local diagnostic imaging Local Diagnostic Imaging Specialist Diagnostic Imaging Key: Patient referral for assessment / management Patient referral for diagnostic imaging 5.0 OPERATIONAL DETAILS OF SERVICE DELIVERY 5.1 NEUROREHABILITATION TEAM MEMBERS Neurorehabilitation services are provided by a range of allied health professionals (AHPs) including Physiotherapists Occupational therapists Speech and Language Therapists Dieticians The following health and social care professionals may also have a role in neurorehabilitation Nurses Primary health care team Neuropsychology, neuropsychiatry and psychological therapy Social services care manager/continuing care manager Orthotists/appliance officers Chaplaincy services Essex Cancer Network 10 V 1.3

11 The Cancer Network Macmillan AHP Lead will ensure that Level 4 specialist AHPs are available in each locality in the network and that patients are able to access them as and when appropriate. 5.2 NEUROREHABILITATION FACILITIES WITHIN ECN The NICE IOG for Brain & CNS Tumours (2006) states there should be provision of rehabilitation facilities inpatient, outpatient, domiciliary services, hydrotherapy, specialist neurorehabilitation services, and specialist palliative care services. Below is a table indicating the service provision across the Network. Area In-patient Community/ Out-patient Mid Essex North East South East Oncology ward team Stroke Unit (post-op) Oncology ward team Medical ward team Oncology ward team Neurorehab (Physio only) Neurorehab team (OT, Physio SLT) Physio (general community) Hydro No Yes Specialist Palliative Care AHPs OT and Physio at Farleigh Hospice OT and Physio at St Helena Hospice Specialist Neurorehabilitation Referred to Northwood Park for assessment Referred to Homerton for assessment No None available Referred to Northwick Park South West Pagglesham Ward team Palliative Care ward team Neurorehab team (physio only) Palliative OT Team (equipment only) Palliative Care OT (equipment only) Yes Very limited Physio input only Referred to Northwick Park Queens General ward teams Neurosurgical team Neuro PT, Community OT No OT and Physio at St Francis Hospice Referred to Homerton or Northwick Park For a more in depth listing and contact details see section 5.6 Communication The Brain and CNS IOG states that where there is no local provision of neurorehabilitation facilities, the network should provide a cancer network neuro-oncology rehabilitation team Almost all neuroscience centres in England and Wales (96%) reported having access to a specialist neurorehabilitation unit. Access to specialist neurorehabilitation units was much lower for oncology/radiotherapy units (60%). All patients with rehabilitation potential should be offered referral to appropriate rehabilitation services. If patients choose not to accept a referral to such a unit, this should be documented in their medical notes to ensure that this can be audited. Essex Cancer Network 11 V 1.3

12 5.2.4 Service providers should ensure that all patients admitted to hospital with MSCC, Brain and CNS tumours have access to a full range of healthcare professional support services for assessment, advice and rehabilitation Service providers should focus the rehabilitation of patients with MSCC, Brain & CNS tumours on their goals and desired outcomes, which could include promoting functional independence, participation in normal activities of daily life and aspects related to their quality of life Service providers should offer admission to a specialist rehabilitation unit to those patients with MSCC, Brain & CNS tumours who are most likely to benefit, for example, those with a good prognosis, a high activity tolerance and strong rehabilitation potential It must be noted that there is no provision for in-patient specialist neurorehabilitation within the Essex Cancer Network. Due to the long waiting lists and referral criteria for specialist units patients with brain and CNS tumours are rarely referred. The ECN Brain & CNS NSSG is in agreement that this is not justifiable as patients are being denied access to such facilities which may have a huge impact on quality of life. The Neuro-rehab Lead and NSSG Chair are therefore working with service providers to develop a business case to establish local specialist services to meet the needs of our population. 5.3 REFERRAL PROCESS FOR REHABILITATION SERVICES Service Users should be assessed for their rehabilitation needs at each key stage of the cancer pathway and at any point where there is a change in their condition. A holistic assessment using a recognised assessment tool should be performed by the key worker in order to determine and rehabilitation needs. Referrals to AHP services should be offered and a copy of any referrals should be kept in the patient s medical records and their own patient records where applicable There should be AHP input at NSMDT and CNMDT meetings to ensure that rehabilitation needs are discussed and ensure that appropriate services are signposted to. Decisions made at the meeting should be noted in the outcomes on the MDT proforma. Referrals should be made within 24 hours of the meeting by a person nominated at the meeting and a copy of the referral should be stored in the patient s medical notes. Teams should ensure they have relevant contact details for all local and regional services (as listed in section 5.6 of this document) For in-patients referrals should be made to the appropriate teams and responded to within an appropriate timescale as per local policy Patients meeting the on-call respiratory physiotherapy criteria (e.g. for aspiration or deteriorating post-operative respiratory complications) should be treated as per the local on-call physiotherapy service policy. Patients at risk of aspiration should be placed Nil By Mouth and should be assessed by a dietician and speech and language therapist within 24 hours of referral For patients with suspected MSCC, the ECN Care Pathway for Acute Management of Suspected Metastatic Spinal Cord Compression (MSCC) must be followed. Patients should be nursed flat in neutral spinal alignment (including log rolling) until spinal stability has been ensured. Following treatment, the protocol for mobilising patients safely should be followed (NICE MSCC IOG, 2008) Mobility and manual handling risk assessments should be performed within 72 hours of admission, and an appropriate management and treatment plan put into place which is communicated to all ward staff For service users transferred to the Neurosurgical Centre, the Occupational Therapy team at Queens will liaise with local OT teams to ensure that equipment required for discharge is organised and delivered in a timely manner to facilitate a timely and safe discharge. This will include carrying out any access visits required locally. Essex Cancer Network 12 V 1.3

13 5.3.8 Patients requiring specialist neurological rehabilitation as an in-patient to improve function and quality of life should be referred to the regional rehabilitation centre as per the local policy. Patients must have rehabilitation potential but should not be excluded due to a cancer diagnosis or a palliative condition. A specialist neurorehabilitation centre should be available within the cancer network For out-patients, patients should be referred to the appropriate local rehabilitation services. For complex physical needs, this should be a neurorehabilitation team. For complex psychological needs this should be a specialist palliative care team at a hospice. For patients with general rehabilitation needs it may be more appropriate to use general rehabilitation teams, who would be able to access specialist advice from Level 4 practitioners in neurorehabilitation or specialist palliative care services if required Patients should be able to access neurorehabilitation and/or specialist palliative care services rapidly due to the nature of the disease which can cause rapid changes in condition. Teams should ensure that there are local policies in place to enable this rapid access to assessment, as this may prevent avoidable hospital or hospice admissions and enable patients to remain at home for as long as possible. Patients and/or their families and carers should have clear contact points for these services Referrals should be screened and prioritised by local teams as per local policy.. Any referrals not considered appropriate should be discussed with the referrer within 1 working week to enable alternative arrangements to be made Due to the complexity of neurological and cognitive deficits, patients should be offered domiciliary visits where required Service users should be provided with a range of methods communication to arrange appointments to ensure patients with sensory deficits or cognitive impairments have access to services Due to the overlap of complex physical and psychological needs for patients with brain & CNS tumours neurorehabilitation teams and specialist palliative care teams should meet regularly to discuss patients who may be under the shared care of both teams, as occurs with other conditions (e.g. Motor Neurone Disease) Service Users should also be referred to survivorship groups where appropriate, e.g. exercise groups or vocational rehabilitation projects to ensure general health and wellbeing is addressed. This may require onward referral to specialist services e.g. benefits service to access assistance with returning to work etc Patients coming to the end of treatment should continue to have access to rehabilitative therapies for an indefinite period, and should know how to initiate such access. 5.4 SERVICE PROVISION Physiotherapy Input Neurological assessment Mobility assessment Falls and balance assessment Prophylactic respiratory and thromboembolic input Respiratory physiotherapy Positioning and seating issues Vocational Rehabilitation Pain management Fatigue management Reduced exercise tolerance (including myopathy) Essex Cancer Network 13 V 1.3

14 Trachaeostomy care Breathlessness management Hydrotherapy Botox treatment Continence advice Occupational Therapy Input ADL assessments Neurological assessment Cognitive assessment Falls and balance assessment Positioning and seating issues Vocational Rehabilitation Fatigue and anxiety management Wheelchair assessment Splinting Dietetic input Nutritional assessment Dysphagia Nausea and vomiting Fatigue management Anorexia/cachexia Steroid induced diabetes Enteral feeding Diet modification (neurological bowel management) Speech and language therapy input Communication advice Vocal rehabilitation Dysphagia assessment and management 5.5 KEY WORKING RELATIONSHIPS Due to the complexity of tumours of the brain and CNS, there are many key working relationships. Patients should be given contact details for all relevant services. Local MDT teams should ensure that they have the contact details for all the local services held centrally and the neuroscience centre should have a copy of services from each locality The following should be on the key contact lists: CNSs Key workers Clinicians (Surgeons, Neurologists, Oncologists) MDT Co-ordinators Palliative Care Team Members Hospice services Support Groups Charities e.g. Headway, Brain Tumour UK For Teenagers and Young Adults, a contact at the Primary Treatment Centre (UCLH) Information centre Benefits service Physiotherapy teams Occupational Therapy Teams Orthotists Speech and Language Therapy Teams Essex Cancer Network 14 V 1.3

15 Dietetic and Nutrition services Network Rehabilitation Lead 5.6 EQUIPMENT PROVISION Patients should have holistic assessment at all key stages of the cancer pathway using a recognised holistic assessment tool which should highlight any functional problems which may require onward referral for further specialist assessment for equipment needs Providers should ensure suitable facilities and ready access to equipment to support effective and safe rehabilitation. They should ensure equipment is available to enable patients to continue their rehabilitation plan at home. Priority should be given to those patients who are dying Providers should ensure that patients requiring specialist seating have rapid access to assessment and provision of this equipment For larger items of equipment such as standing frames which may benefit patients, it may be necessary to access grants or charitable funding (e.g. Macmillan, Catalyst). This should be offered to patients in a timely manner to ensure full benefit Delays in accessing equipment and facilities may occur with failure to prioritise services required, particularly for patients at the end of life. The ECN Rehabilitation Board will work with the equipment services to develop a policy to ensure equipment is available to patients within 24 hours of the request at the end of life Providers should be able to demonstrate robust systems of forward planning for orders and delivery times, with capacity to anticipate individual patient needs for appliances such as appropriate wigs, splints and orthoses. A ready supply of appliances commonly needed by patients with particular conditions should be available. Patients should be made aware of the appropriate person to contact to obtain fresh supplies or to discuss problems or concerns. 5.7 COMMUNICATION Area Service Name Contact details Mid Essex North East Essex Physiotherapy (Acute) Occupational Therapy (Acute) Physiotherapy (Out patient Neurorehabilitation) Dietetic Department (Acute and Out-patient) Speech and Language Therapy (Acute and Oupatient) Specialist Palliative Care Physiotherapy (acute) Lisa Curtis Lead PT Planned Care Broomfield Hospital Senior OT (oncology) Broomfield Hospital Debbie Snell Lead PT Out-patients, Broomfield Hospital Broomfield Hospital Broomfield Hospital Helen Peter/Nikki Tuff, Senior OT/PT, Farleigh Hospice Amy Eade Senior Physiotherapist bleep 241 or Essex Cancer Network 15 V 1.3

16 Essex County Hospital Occupational Therapy (acute) Senior OT Essex County Hospital South East Essex Physiotherapy (outpatient Neurorehabilitation) Occupational Therapy (out-patient Neurorehabilitation) Dietetics (acute and community) Speech and Language Therapy (acute and community) Specialist Palliative Care Occupational Therapy (acute palliative) Jane Forster Specialist Physiotherapist Colchester General Hospital Cathy Chambers Specialist OT Colchester General Hospital Heather Copson Oncology Dietitian Essex County Hospital Ruth Myers Lead SLT Anglia Community Enterprise Kimberley Rice/Liz Ritson Senior PT/OT St Helena Hospice Beverley Kemp Senior OT Southend General Hospital or bleep (need to refer to full hospice services) Physiotherapy (Inpatient Neurorehabilitation) Joanne Lay Senior PT Southend General Hospital Dietetics (acute and community) Dietetic Team Southend Hospital Speech and Language Therapy (neuro community team) Speech and Language Therapy Team Southend Hospital South West Essex Occupational Therapy (Community) Physiotherapy (community) Occupational Therapy (Acute) Physiotherapy (Acute) Kerry Lockhart Clinical Lead, Duty OT Team South East Essex PCT Susanne Barton Specialist Physiotherapist Natasha York Specialist OT Basildon Hospital Sue Webb Specialist Physiotherapist Basildon Hospital ext ext bleep 6203 Occupational Therapy (Community) Matthew Goddard Specialist OT Basildon Speech and Language Therapy (acute & community) Dietetics (acute & community) Rebecca Kelso Speech and Language Therapist Basildon Hospital Dietetic Team Basildon Hospital ext ext Essex Cancer Network 16 V 1.3

17 Queens Hospital, Romford (Neurosurgical Centre) Physiotherapy (Outpatient Neurorehabilitation) Occupational Therapy (Team Lead) Physiotherapy (Neuro Team) Occupational Therapy (Neuro Team) Neurorehab Team Basildon Hospital Mark Mainwood Specialist OT Queens Hospital Charlotte Turnpenny Specialist Physio Claire Howley Specialist Neuro OT ext ext ext For emergency presentations transferring as in-patients between local hospitals and the neurosurgical centre there should be a telephone handover and a copy of patient notes and/or a treatment summary and patient goals Any telephone communication should be documented in the patient records or on relevant systems (e.g. System 1) Patients should be able to access appointments using a variety of communication styles, depending on the needs of the patient. Services should take this into account when making initial contact For service users with communication difficulties or cognitive impairment service providers should make use of carers, relatives or Power of Attorney in decision making process/communication with consent of the patient where appropriate A range of tools for communication taking into account patient needs, including information prescription, should be offered to all patients informing them of relevant services, contact details and important information (e.g. treatment information, exercise programmes etc) A discharge summary should be sent to the referrer, patient and GP advising of treatment given, goals (whether met or outstanding) and any onwards referrals required. 5.8 USER INVOLVEMENT The Brain & CNS NSSG and Rehabilitation Board should have 2 User Representatives (patients or carers) who are responsible for providing the patient perspective on any issues raised (11-1A-202K). If User Representatives are not available for the group, the User Facilitator for the Cancer Network will attend meetings to ensure that User views are taken into account. As the NSSG and Rehabilitation Board are responsible for producing and reviewing this document, service users will be involved in any service development There must also be a member of the CNMDT who should be nominated as having specific responsibility for users and carers issues and information (11-2K-101). Essex Cancer Network 17 V 1.3

18 REFERENCE LIST Dietz, J.H. (1980) Adaptive Rehabilitation in Cancer. Postgraduate Medicine, 68(1), National Council for Hospice and Specialist Palliative Care Services. Fulfilling Lives. Rehabilitation in palliative care. London: NCHSPCS. August Nice Guidance: MSCC, Supportive & Palliative Care, Brain & CNS Essex Cancer Network 18 V 1.3

19 AHP Diagnosis & Care Planning Treatment Post treatment Monitoring Palliative/end of life care Intervention Rehab Pathway p.2-3 Rehab Pathway p.3-5 Rehab Pathway p.6-7 Rehab Pathway p.7-9 Rehab Pathway p Team Local Hospital Teams Surgery Queens Hospital, Romford Radiotherapy Southend/Colchester Chemo- Broomfield, Colchester, Southend Physiotherapy Impaired mobility/function Respiratory problems Impaired upper limb function Falls Manual handling issues Seating/positioning problems Impaired balance Carer/family support Vocational rehab Reduced exercise tolerance Fatigue Trachaeostomy care Pain Local Hospital teams, neurorehabilitation teams or hospice Local Hospital teams, neurorehabilitation teams or hospice Breathlessness neurorehabilitation teams or hospice Occupational Therapy Concerns with ADL s and coping at home Anxiety Falls Manual handling issues Impaired upper limb function Seating/positioning problems Carer/family support Wheelchair assessment Fatigue Vocational rehabilitation Cognitive rehabilitation Essex Cancer Network 19 V 1.3

20 AHP Diagnosis & Care Planning Treatment Post treatment Monitoring Palliative/end of life care Intervention Rehab Pathway p.2-3 Rehab Pathway p.3-5 Rehab Pathway p.6-7 Rehab Pathway p.7-9 Rehab Pathway p Team Local Hospital Teams Surgery Queens Hospital, Romford Radiotherapy Southend/Colchester Chemo- Broomfield, Colchester, Southend Speech and Language Therapy Dietetics Communication problems with voice or speech Dysphagia Carer/family support Dysphagia Poor nutritional intake MUST score>2 Anorexia/cachexia Carer/family support Inter-operative language assessment Enteral feeding Fatigue Nausea & vomiting Taste changes Dry mouth Steroid induced diabetes Local Hospital teams, neurorehabilitation teams or hospice Local Hospital teams, neurorehabilitation teams or hospice If a diagnosis of lymphoedema is made at any point of the cancer journey the patient should be referred to the local Lymphoedema Service. Signs and symptoms include: neurorehabilitation teams or hospice Lymphoedema Swelling in the arms, hands, fingers, shoulders, chest, or legs. This may occur for the first time after a trauma (e.g. bruises, cuts, sunburn, and sports injuries), after an infection in the part of the body that was treated for cancer, or after an airplane trip lasting more than three hours. A "full" or heavy sensation in the arms or legs. Tightness of the skin. Decreased range of movement in the hand, wrist, or ankle. Difficulty fitting into clothing in one specific area, or new tightness of jewellery. Essex Cancer Network 20 V 1.3