Ambulatory care of adults undergoing CAR-T therapy

Introduction

This information sheet has been designed for patients and their carers/companions to provide an overview of the ambulatory CAR-T treatment available on the Haematology Day Unit.

What is ambulatory treatment?

Ambulatory care allows us to offer some of your CAR-T treatment without having to stay in hospital overnight.

Instead of being admitted to a ward and receiving your treatment as an inpatient you will attend the day unit as an outpatient for your treatment. Overnight you will stay in accommodation on the hospital site, or if you live within driving distance from the hospital at home.

How will I know whether ambulatory care is right for me?

It cannot be emphasised enough that your safety, wellbeing and the overall quality of your care are the main aims of your treatment. It is important to find out if this sort of care is going to be suitable for you. Before discussing ambulatory care with you, your haematology consultant will have deemed you eligible for this pathway. Your haematology consultant as well as your CAR-T clinical nurse specialist will discuss the options and details of this approach with you.

There are several things that you need to be aware of and understand before you agree to have your ambulatory treatment in the Haematology Day Unit.

• You may (but do not have to) have a named carer or caregiver with you 24 hours a day. This person can be a relative or a friend and they can stay with you in CUH accommodation at all times. Accommodation will either be onsite, or in a self-contained apartment near to the hospital.
• You and your carer or caregiver must be fluent in written as well as spoken English.
• You agree to attend all your appointments in the Haematology Day Unit for assessment and any treatments that are needed. Each visit may take several hours and you will need to attend the Haematology Day Unit every day during your treatment schedule.
• You agree to stay in CUH accommodation provided by us for you and your carer. If you live within 45 minutes’ drive from CUH you may be able to stay at home rather than in the onsite accommodation.
• You agree to take your own medication at the times stated.
• You and your carer are capable of taking your temperature and contacting the Haematology Day Unit team on 01223 217720 or Haematology emergency number 01223 274225 if your temperature goes above 38°C and/or become unwell.
• You and your carer must agree to contact the Haematology Team if you feel unwell. You will be given specific instructions of whom and when to call.
• You must be aware of the importance of looking after your PICC or Hickman line to keep it clean and free of infection. It will be flushed and assessed at your daily visits to the Haematology Day Unit.
• You understand the importance of following the advice you are given and the complications that can occur with your treatment.
• You agree to be admitted to our inpatient transplant unit when advised by the Haematology doctor.
• You and your carer/caregiver must be contactable by telephone 24 hours a day, and you need to have and be able to use a mobile telephone so that you can always contact and be contacted by the team at the hospital.
• You understand that you or your carer can request your admission to our inpatient transplant unit at any time.
• You and your carer/caregiver need to be physically well and able to undertake normal activities such as washing and dressing.

What advantages does ambulatory care offer me?

• You will be able to spend your time away from the hospital in a comfortable environment, allowing you to rest.
• Your family member or friend can stay with you at all times – this is not possible if you are an inpatient on the ward.
• You will receive the same treatment as on the ward except we will see you at an allotted appointment time, between the hours of 08:00 (8am) and 19:00 (7pm).
• You will still have 24 hours a day, seven days a week access to expert medical and nursing care even though you are not staying in a hospital ward.
• You will not be subject to delays in your treatment if inpatient beds are unavailable when you are due to receive your course of treatment.
• It is hoped that this will add a greater degree of privacy, independence and normality to your treatment experience.

On-site accommodation

You will stay in the on-site (non-clinical) accommodation. This will be booked for you by a member of the blood and marrow transplant team.

• Keys will need to be collected from Sanctuary Housing reception before 16:00 (4pm) – 14:00 (2pm) on a Wednesday – and returned when your stay is complete.
• The accommodation comprises a bedroom with ensuite bathroom and a shared living area and kitchen. The living area and kitchen are shared with the occupants of one other bedroom. Each bedroom has two single beds. You will need to share a bedroom with your carer if they stay with you.
• The kitchen is fully equipped and there are local supermarkets within close distance of the hospital for your supplies.
• There is no charge for staying in this accommodation.
• You should be contactable by phone at all times.
• WiFi is available in the flats, courtesy of Addenbrooke’s Charitable Trust (Kingston House flats) and the Karen Morris Memorial Fund (Linton House flats).

Yourspace apartments

• You will be allocated a one-bedroom apartment in Cambridge.
• A yourspace representative will meet you at the apartment to show you around and give you the keys.
• The accommodation comprises a double bedroom with ensuite, a living area and a fully equipped kitchen.
• There are local supermarkets within walking distance.
• There is no charge for staying in this accommodation.
• You should be contactable by phone at all times.
• WiFi is available in the flats.
• An emergency contact is available 24hours if you have issues with the accommodation.

Can I stay at home rather than in on-site accommodation?

• If you live within 45 minutes driving distance to CUH you may be able to stay in your own house rather than in our on-site accommodation.
• You will need to be able to attend for urgent assessment if feeling unwell as soon as possible and within 45 minutes.
• You will need to attend the Haematology Day Unit daily for treatment and medical review. It is recommended that you do not drive yourself. You can either come in via taxi or by a friend/relative/carer driving you in.

What happens when I attend the Haematology Day Unit?

• You will be given appointment times to attend for your treatment.
• You will be seen by a nurse, who will take your observations, including temperature, pulse and blood pressure. You will all also be weighed each visit.
• Symptoms such as nausea, vomiting, diarrhoea and fatigue will be assessed each time you visit.
• You will be seen by a doctor if you or the nurse feel that this is needed.
• Bloods will be taken. You may have to wait for the results of these tests.
• If necessary, other investigations such as an ECG or urine test will be carried out.
• You will receive your prescribed treatment and be discharged to the hospital accommodation or home at the end of the infusion.

The amount of time you will need to spend on the Haematology Day Unit will depend on the treatment you are receiving. Staff in clinic and on the Haematology Day Unit will make sure you know how long you should expect each visit to take.

Some treatments may take longer than expected, or we may experience delays in your treatment. We will do everything to avoid this but will keep you informed of what is happening if delays do occur.

When will I be admitted onto the ward?

You may be admitted to an inpatient Haematology ward at any point throughout the treatment period if medically indicated. You will be admitted to the inpatient ward the day before your CAR-T cells are due to be administered.

Is there anything I need to do when I am in the accommodation/at home?

The aim of ambulatory care is that you continue to lead as normal a life as possible whilst undergoing treatment.

You will need to take your temperature as usual – twice daily or in-between if you feel unwell.

If you are concerned about anything you should phone the emergency phone number, day or night, for support and advice.

Food and nutrition

It is very important that you drink at least two litres of fluid a day. This helps to protect the kidneys against the effects of the chemotherapy. If this is not possible then fluids will be given to you via your Hickman line during your visit to the Haematology Day Unit.

You should be eating a ‘clean diet’ with foods that are known to have low levels of bacteria. You will be given written information about this.

While you are at the hospital having treatment, you will be provided with the following:

• Sandwiches at lunch time
• Tea and Coffee

The Haematology Day Unit will provide meal vouchers to the value of £10 for your use only. Please note that we do not provide meals for your carer. These have kindly been provided by the Addenbrooke’s Charitable Trust (ACT).

The vouchers can be used to purchase food and drink in the wellspring restaurant.

What if I become unwell during my treatment as an ambulatory patient?

It is important that you contact the hospital using the emergency telephone number if you develop any of the following symptoms:

• One temperature of 38°C or above
• Shivers, hot flushes or flu like symptoms
• Persistent episodes of nausea, vomiting or diarrhoea or constipation
• Shortness of breath, chest pain or difficulties with your breathing
• Persistent headaches or discomfort with bright lights
• Redness or pain around your Hickman line site or PICC
• Bruising or bleeding with no apparent reason
• Skin irritation or rash
• Feeling generally unwell

The 24hour emergency number is: 01223 274225

In an emergency dial 999

Depending on your symptoms it may be necessary to admit you to hospital. Staff will advise you where to go to be reviewed. If the Haematology Day Unit is open, you will be seen there, if possible. Alternative arrangements will be made if it is not possible.

If you are asked to come to the hospital to be seen urgently it is important that you come straight away.

If you are experiencing any infective symptoms such as a runny nose, sneezing, diarrhoea and/or vomiting please inform us before you attend the hospital as we may need to arrange for you to be seen in a side room.

Useful addresses and telephone numbers

Dr Charles Crawley - BMT Program Director: Secretary 01223 596239

CAR-T Clinical Nurse Specialist: Office 01223 274669

Ward C10 Nurses line: 01223 217255 / 01223 217312

Haematology Day Unit Nurses line: 01223 217720

Dedicated Haematology Helpline Phone Number: 01223 274 225

(For Urgent enquiries 24 hours a day, 7 days a week)