Display Patient Information Leafelts

Pathway Neurosurgery for Suspected Brain or Spinal Tumour

Issue date: July 2021 

Review date: July 2023

Ref: C-184/Neuro/LD/TS/GB/Discharge after surg for B & S Tumour’s v8

PDF:  Pathway neurosurgery for suspected brain or spinal tumour final [pdf] 451KB

University Hospitals Plymouth Neuro-Oncology Specialist Nurse Team:

Name:                                             Contact: 01752 431210         

Louise Davies       Lead Nurse

Helen Cooper       Specialist Nurse

Lara Blanchard     Specialist Nurse

Claire Owen         Support Worker

Royal Cornwall Hospital Neuro-Oncology Nurse:

Name

Wendy Dreyer                07880 465243

Available Monday-Friday 08.30 -16:30 (Excluding Bank Holidays)

Specialist Nurse/Key Worker Role

You will have a named Specialist Nurse/Key Worker allocated to support you. We work closely with the team of Doctors, Nurses and other health care professionals at University Hospitals Plymouth. For those patients that require follow up care in Cornwall, your care will be transferred to Wendy Dreyer – specialist nurse. For Torbay patients, the Acute Oncology Service team will support and co-ordinate your care locally. For Exeter and North Devon, your Oncology Consultant will advise you regarding local support services.

We are here to support you and those close to you throughout your care pathway - tests, investigations, surgery and for those patients undergoing oncology treatment in Plymouth.

Our role is to be easily accessible in order to:

  • Help coordinate your care leading up to diagnosis through to follow up care.

Be a familiar face who can provide:

  • Information on tests, investigations and treatment options

  • Support and advice on symptom control

  • Information and education about your illness or diagnosis

  • Information to services and professionals who might be involved in your care and provide additional support.

Often when leaving the hospital you may think of things you should have asked or you may wish to have things explained further. We are also available to help at this time.

With your permission, we are available to speak to your spouse, partner or family. They may have their own questions about your care.

We are available Monday to Friday 08:00 – 16.00 to help with any questions and/or concerns. We offer a telephone support service and messages are collected by the team Mon – Fri between the hours of 08.30 – 15.00. The team aim to respond to your message within 24 hours.  We are not an acute or emergency service, therefore if you have an urgent medical concern then please contact your General Practitioner Service, telephone NHS 111 for advice or dial 999 for an ambulance in an emergency.

If your enquiry is about:

  • A clinic appointment or a date for your operation then please contact your Consultant’s secretary, however please be aware that they will be in touch as soon as a date has been allocated by your Consultant either by telephone or letter.

  • A scan appointment then please telephone the Radiology Department Tel:  

  • A scan result please contact your Consultant’s secretary if you have not heard within 4-6 weeks of your scan.  Please be aware that the secretary will NOT be able to give you any results but they will be able to inform your Consultant.

Please be assured that if you require urgent intervention or treatment then the Neurosurgical Team will coordinate this.

Holistic Needs Assessment

A Holistic Needs Assessment (HNA) is a simple questionnaire that allows you to highlight the most important issues you have at this time.  You can contact your Clinical Nurse Specialist/Key Worker or Support Worker if you have any issues you wish to discuss.

These can relate to:

  • Symptoms and physical concerns (e.g. side-effects from treatments, pain, fatigue).

  • Feelings and emotions (you may feel low or worried).

  • Difficulty with relationships (home, social or work).

  • Money worries (you may want to know more about the financial help available to you).

  • Other concerns.

Your responses will be used to develop a personalised care and support plan with your Clinical Nurse Specialist/Key worker or Support Worker, which will enable your needs to be met in a timely and appropriate way.

With your agreement the person carrying out your assessment may refer you to other services that may be better placed to support you with that specific concern.  Alternatively, if you prefer, you will be given written information about services.

Pre-operatively:

If the outcome of your clinic consultation is for you to have an operation then you will need to attend a pre-operative review.

This will involve a further appointment with the nurse led pre assessment team based in the Outpatients Department on Level 6. It may be possible for you to see the team after your clinic review, however if they are unable to accommodate you at that time you will need to come back for an outpatient appointment at a later date.

Unfortunately if you live outside of the University Hospitals Plymouth catchment area this assessment cannot be undertaken at your local hospital.

Pre-assessment is about checking your general health and fitness for surgery. (Please see leaflet in pack).

If you did not have a pre assessment review at the time of your clinic appointment then your Consultant’s secretary will arrange a pre-assessment appointment for you. You should receive a telephone call or a letter outlining the details of this appointment once it has been booked. If you have any questions or concerns around the date or time of this appointment please ring the  telephone number on your appointment letter to discuss a time that is more convenient for you.

Your Consultant may want you to have further investigations before surgery for example a brain or spine CT or MRI scan. These will be organised for you and undertaken at either your local hospital or co-ordinated with your pre assessment appointment at University Hospitals Plymouth.

Once you have attended pre assessment and had any further investigations required you will then be ready for surgery.

You will need to have a COVID test prior to surgery; your consultant’s secretary will arrange this for you. You should self-isolate following this test leading up to your admission and minimize contact with others. Current guidance will be given to you at pre-assessment.

If you have not had a COVID vaccination but are due to have either your first one or have had one already and are due to have your second, please discuss with your Consultant the timing of this vaccination if your plan is to have surgery.

Surgery:

When a surgery date becomes available your Consultant’s secretary will either telephone you or send a letter in the post confirming your admission details, along with any other instructions necessary for your admission.

Your Consultant might be able to give you an indication as to when your surgery will take place when you are seen in clinic, but please note this will only be a provisional date and you will need to await final confirmation by telephone/letter.

Patients being admitted for neurosurgical procedures are admitted on the day of operation to Postbridge Ward, level 4, University Hospitals Plymouth unless otherwise advised. Instructions will be sent to you in the post outlining your specific admission details to include fasting and medication instructions.

Provisional surgery date: …………………………………………..

Please note:

Every effort is made to ensure operations go ahead as planned, however due to the nature of neurosurgery it is important that you are cared for in the ward area best suited to your post-operative needs. This often involves being cared for in the high dependency/intensive care area for a 12 - 24 hour period. If you require this higher level of care post operatively and the appropriate bed following surgery is not available for you, this may lead to a delay in your surgery. Every effort is made to avoid this, however sometimes this situation is unavoidable.

Accommodation

Unfortunately University Hospitals Plymouth does not have any accommodation within the hospital grounds for relatives. There are however a number of hotels available within close proximity to the hospital.  If relatives wish to stay locally, it is their responsibility to arrange this. Many of our patients choose to stay at ‘Hearts Together’ Hospital Hotel (Please see leaflet in pack).

Parking:

If you need advice regarding parking or parking costs then please speak with the parking team based at the main entrance, level 6, who will be able to advise you.  Alternatively information can be found on the Trust website.

How long will I be in hospital?

This will depend on the procedure you are undergoing and inpatient stays can range from 1 to 7 days.  If the expectation is that this may be longer, then your Consultant will have discussed this with you in clinic.

Estimated length of hospital stay: ……………………………........

Medication:

Steroids: You may already be taking a steroid called Dexamethasone. This medication should not be stopped prior to your surgery unless advised by your Consultant or Specialist Nurse/Key worker.

Steroids – (See page 71- Understanding Brain Tumours booklet)

Current dose: ………………………………………

Planned Pre-Surgery Schedule: ………………………………………………………………………………………

Anti-Seizure Medication:

If you are taking anti-seizure medication this should continue in the pre-operative phase. Occasionally the dose may need to be reviewed and your Neurosurgical Team will advise you. Patient’s not taking anti-seizure medications - may have a short course prescribed around the time of their surgery.

NB:  You may also be under the care of a Neurologist if you are known to have seizures.

Anti-convulsants: (See page 71 - Understanding Brain Tumours booklet)

If you would like a Seizure First Aid Leaflet or a seizure diary then please request this from your Specialist Nurse/Key worker.

Driving:

If you have been diagnosed with a suspected brain or spinal tumour you should not drive unless otherwise advised by your Consultant, Specialist Nurse/Key worker or the DVLA.  It is your responsibility to inform the DVLA regarding your situation and they will advise you.  Information is also available on the DVLA website

(See page 35 – Understanding Brain Tumours booklet).

How will I be followed up after my surgery?

This will depend on your particular situation and whether your histology results require a referral for you to have further treatments. You’re Consultant and/or Specialist Nurse/Key worker will be able to advise you as to your personal follow up plan prior to discharge from the ward.

Please highlight prior to discharge

Post-surgery follow up:

  • Post-operative MRI or CT scan prior to discharge

  • Attend face to face clinic appointment or a video consultation within two weeks of your discharge for results and further treatment plans.  The ward team will advise on discharge or you will be contacted by your Consultants secretary. 

  • The Specialist Nurse team will make contact post discharge.

  • Tumour Surveillance Programme.

  • Referral to Oncology.

  • Discharged from service.

When should my clips/sutures be removed?

Once you are home you will need to arrange an appointment with your Practice Nurse or District Nurse via your General Practitioner’s (GP) surgery.  Clips and/or sutures are usually removed 7-10 days after your operation

When will I be allowed to wash my hair?

We would normally recommend that you avoid washing your hair for 24 hours after your clips/sutures have been removed.

What should I do if my wound becomes sore or inflamed?

If your wound becomes, red, inflamed, painful, and/or you develop a temperature please contact your GP immediately for a review – antibiotics or a neurosurgical consultation might be required.

Can I drive following my surgery?

Following a brain operation there may be a period of time that you are not allowed to drive by law.  This will depend on the location or your tumour and type of surgery that you have had and whether you have had or are at risk of seizures.  It is your responsibility to inform the DVLA of your situation. 

The DVLA will advise you as to how long you will be exempt from driving dependent on the operation undertaken and your particular medical situation.  The DVLA will want to know: the name of the Neurosurgical Consultant overseeing your care along with the operation undertaken.

Is it normal to feel tired after surgery?

Yes, it is not unusual to feel tired following a brain operation.  It is important to slowly increase the daily activities you’re involved with once at home. However it is also important not to overdo things.  Listen to your body, if you feel tired - rest. 

Prior to discharge home the Physiotherapist and/or Occupational Therapist might also give you advice or instructions regarding the activities that are safe for you to undertake.  If you’re not sure what you can and can’t do then speak with the Nurse managing your care.

Will I get seizures?

Patients with a brain tumour are at an increased risk of having a seizure.

For this reason we sometimes prescribe anti-seizure medication as a precaution before and after the operation.  You will be advised by your Consultant as to whether your anti-seizure medication needs to continue indefinitely or whether it will be reviewed at your follow-up clinic appointment.

Occasionally patients who have previously had seizure may find they have an increase in seizure activity due to the surgery, before things settle down again.  For those patients that haven’t had any previous seizures there might be an increased risk of seizures due to the nature of the operation that has been undertaken. 

If you are known to have had or are at risk of seizures you will need to be given an epilepsy safety leaflet. (Please ask the Ward Staff)

On discharge it is really important to ensure all anti-seizure medication is taken regularly.  Unless advised by your Consultant anti-seizure medication should not be stopped.

What should I do if I get new symptoms and who should I contact?

If you experience:

  • Headaches specifically on waking and not relieved by pain killers.

  • Nausea and/or vomiting that doesn’t settle.

  • Seizures.

  • New or worsening limb weakness and/or altered sensation.

  • Visual disturbances.

  • Nasal leak or salty taste in the mouth.

  • Facial weakness.

  • New or worsening speech problems.

  • Swollen or painful calves (*risk deep vein thrombosis).

You should contact your GP, or dial 111 for medical advice or contact your Specialist Nurse/Key Worker to discuss your symptoms if you are unsure. 

However if you have any new symptoms within hours of being discharged to home it would be advisable to contact the Neurosurgical Team via Moorgate Ward, 01752 431953/52.

If you have sudden onset of new symptoms that are not resolving, dial 999 for an ambulance.

Who should I contact when my tablets are getting low?

When you leave hospital you will be given a 14 - 28 day supply of medication.  Repeat prescriptions should be obtained from your GP.  It is important to ensure that these are ordered in advance so that you do not run out.

On leaving the ward you will be given a copy of your Discharge Summary which will list the current medications you are on.  The ward will send a copy of your Discharge Summary to your GP, this will include information regarding your operation, a list of all your current medications and any on-going care needs.  We advise that you make an appointment to see your GP after you have been discharged. The ward nurse will go through all your medications prior to discharge with an explanation of what you are taking and why, as well as when and how they should be taken.

Community Referrals:

If you have been under the care of the Occupational Therapist, Physiotherapist or Speech and Language Therapist during your admission and require on-going treatment, this will be discussed with you prior to discharge. Referrals will be made to the Community Team in your local area.

Prior to discharge your therapy team will give you the contact details of the local team who will be involved in your on-going follow up care.

If you have been referred to a local therapy team prior to discharge home and have not heard from them within 2 weeks of your discharge, then contact:

Helpful Hints:

  1. You can ask your specialist nurse/key worker or support worker for help regarding all aspects of your care and treatment.

  2. You can let us know your concerns and worries.

  3. You can get advice re: finances and benefits.

  4. You can bring someone with you to appointments.

  5. You can get advice about keeping well, managing tiredness during and after treatment.

Who should I contact if I have any further questions or concerns about my on-going care needs following my discharge?

It is YOUR responsibility to contact a member of the team if you have any questions and/or concerns about your on-going care or follow up. 

If it is regarding post-operative follow up, clinic or scan appointments please contact your Consultants secretary. 

If you are feeling unwell then you should contact your GP for a review or speak with your specialist nurse. 

You may be approached and asked to participate in clinical trials or projects.   Whether you agree to participate or not, your care within the neurosurgery service will NOT be affected.

Current projects/trials: – information available if required.

  1. MOT Project

  2. ROAM

Will I need to be seen by an Oncologist?

This will depend on your histology/tissue results.  Not all patients need to be followed up by an Oncologist.  At the time of your operation tissue will be sent to the laboratories to be looked at under the microscope, this will tell us what type and grade of tumour you have.  Results usually take 5 - 7 days; however with further genetic testing undertaken this can sometimes take a number of weeks. 

Your specialist nurse will coordinate an appointment for you to receive histology results as soon as they are available.  We would aim for you to be seen by one of the Neurosurgical Team within two weeks.

The Consultant and/or Specialist Nurse will be able to advise you as to whether you need to see an Oncologist as part of your on-going care once the histology results are available.  If required this appointment will be co-ordinated by your Specialist Nurse. 

Those patients living outside of Plymouth will be referred to an Oncologist in their local hospital.

Community Support

Following your diagnosis if you feel that you would like further support from Community Services i.e. Benefit advice, Blue Badge request or Community Palliative Care Support then please speak to one of the Specialist Nurse team who will be able to signpost or refer you to these services.

Due to our caseload demands we rely on patients and family members to contact us if they have questions or concerns relating to their recent diagnosis/situation.

As a Peninsula-wide Specialist Nurse Team we work closely with the Brain Tumour Support Charity.  David Haq is our trained Tumour Support Worker who coordinates and runs a number of Brain Tumour Support Groups across the Peninsula.

If you wish to find out more about this service ask your Specialist Nurse (leaflet in pack).

If you wish to investigate other resources around your diagnosis then we would recommend the following sites:

Macmillan Cancer Support

Cancer Research

Brain and Spine Foundation

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