St Peter’s Hospice€¦ · St Peter’s Hospice Patient Guide Large print version . Page 2...

St Peter’s Hospice

Patient Guide

Large print version

www.stpetershospice.org

Welcome to St Peter’s Hospice

Now that you have been referred to St Peter’s Hospice, and

accepted the offer of our care, we will do our very best to look after you, and your family, in every possible way.

St Peter’s Hospice is a charity providing free care for those with

complicated needs often towards the end of life but nearly always

needing relief from distressing symptoms or worries. We provide

this care to the people of Bristol, South Gloucestershire, North

Somerset and part of Bath and North East Somerset (BANES).

Together with our healthcare partners, such as your GP, District

Nurses and local hospitals, we want to give you the very best of health and social care.

We pride ourselves on our high standards of care; as you would

expect we meet National Guidelines (such as those provided by

the NHS), and we are answerable to the Care Quality Commission, who ensure we provide care of the highest quality.

We have a variety of services at the Hospice in Brentry but also

provide many hours of care by telephone, in the community and

in the homes of our patients. I hope you will find this booklet

useful to familiarise yourself with all the services we provide and

those who provide them. If you and your family would like to

come to the Hospice for an informal look around, you are very

welcome. Please contact the main switchboard and we will

arrange this at a time that is convenient to you.

Simon Caraffi

Chief Executive

About St Peter’s Hospice

St Peter’s Hospice is a Bristol charity that provides care and

support for adults with life-limiting illnesses. We aim to improve

the quality of their living and dying, while also extending support to their families and carers.

We do this in many different ways, in the community as well as at

our hospice building at Brentry; and by working alongside all

other health and social care services. We also provide education

for other health and social care professionals to support them in their work.

All of our care is provided free of charge but it costs us around

£19,000 a day to provide that care. For most of this money we rely on Gifts in Wills, donations, fundraising and our shops.

Confidentiality and Data Protection

Under the Data Protection Act (1998), we need to make you

aware that we keep electronic and sometimes paper records in

relation to your care. The information we hold includes your

name, address, date of birth and your medical history. Relevant

information is shared with your permission both internally and

externally with other healthcare teams or social services where this will benefit your care.

In addition, your GP will share aspects of your GP record with us,

if you have given your permission. There are rare occasions where the law requires us to share information with other parties.

If you do not wish us to discuss your care with family members or other people close to you, please let us know.

The Data Protection Act 1998 allows you to see your records,

should you wish to do so. If you wish to have access to your

medical records, please put this in writing and address it to the

Medical Director. A small charge may apply for this service to cover our administration costs.

Access to Hospice services

Tel: 0117 915 9494

Who is eligible for referral to the Hospice?

Any patient over the age of 18 with an active and advanced

life-limiting disease such as cancer, heart disease, lung

disease and neurological diseases may be referred for

Hospice support at some point in their illness.

Patients are often referred at a time when they are close to

the end of active treatment, or simply when they have

particularly difficult symptoms or problems.

Patients who are nearing the end of their life may also want

to discuss their preferences for how and where they die, and

know what additional support the Hospice may be able to offer them.

Who can make a referral to the Hospice?

Patients are usually referred to the Hospice by a health or social

care professional such as your GP, district nurse or hospital

palliative care team. Your GP must always be aware of the referral and in agreement with it.

What happens next?

Once you have been referred to the Hospice, a nurse from our

Access Team will telephone you to establish the urgency of your

referral and to explain the full range of services that the Hospice

offers. The access nurse can also help you with any urgent issues

and offer guidance and advice. After this you may see a

community nurse specialist or have an outpatient appointment.

Some referrals are for specific services and the Access Team will

make sure that you see the right team. The Access Team also

runs the advice line during normal working hours and at weekends.

On-going contact with the Hospice

Following assessment and whatever initial support may be most

helpful, some patients are then able to manage without on-going

Hospice care. They may be discharged, in the knowledge that

they can contact the Hospice at any time in the future to ask for further help.

Other patients may remain in regular contact with the Hospice.

Cardiopulmonary Resuscitation

At St Peter’s Hospice we think it is important to involve you in

discussions about your future care, including decisions about

cardiopulmonary resuscitation. Cardiopulmonary arrest means a

person’s heart and breathing stop. When this happens, it is

sometimes possible to restart their heart and breathing with

cardiopulmonary resuscitation (CPR). Many of our patients will be

involved in discussions with their healthcare team which result in

a Do Not Attempt Cardiopulmonary Resuscitation (DNACPR)

decision. Please ask for our leaflet ‘Cardiopulmonary Resuscitation

Decisions at St Peter’s Hospice’ if you want more detailed information about our policy and how decisions are made.

Our policy on resuscitation states that in an emergency, if there is

a chance of success and no DNACPR decision has been made, we

will attempt CPR. However, we do not have advanced equipment

for CPR, such as a defibrillator, as it is very rare that we would

use this type of equipment. However, our staff are trained in first

aid CPR and in this situation a ‘999’ ambulance would also be called.

AT HOME AND IN THE COMMUNITY

We work in the community to care for patients in any setting wherever they are living.

Community Nurse Specialists

Tel: 0117 915 9493

Our community nurse specialists are experienced nurses with

additional training in palliative care and communication skills. We

have four teams of community nurse specialists who work from

different localities so that they are near to where people live.

They work alongside GPs and other community nurses in their

area and meet them regularly to discuss patients’ symptom

management, support and care. They also work with hospital teams.

A community nurse specialist will visit you where you are living,

whether this is your own home, community hospital or nursing or

residential home. They will keep in contact with you through visits and telephone calls.

The community nurse specialists aim to help you to manage your

symptoms and enjoy the best possible quality of life. They also

provide emotional support and can help you make decisions about

your current and future care. The care they offer is focussed on

you and your family and carers who are supporting you.

The community nurse specialist

teams work very closely with

the wider Hospice teams and

meet every week to consider

further input that might be

helpful. This could be a home

visit or outpatient appointment

with a senior doctor or referral to other services such as Day

Hospice, Patient and Family Support, Hospice at Home or the Inpatient Unit for an admission.

Hospice at Home

Tel: 0117 915 9436 (8am-4pm)

Our Hospice at Home service provides short-term hands-on

nursing care to you in your own home. This care is provided by

Registered Nurses and Health Care Assistants who are trained and experienced in the care of the dying and their families.

We offer different levels of care depending on your needs. This

may be respite care for a morning, afternoon or overnight to

enable your carers to get some rest or to go out. We particularly

aim to support people who wish to die at home, offering direct

care in the last week or two of life. Every effort will be made to

provide continuity from the established team. However, they also work closely with other care agencies.

The GP and District Nurse will continue to visit and monitor the patient’s symptom control and comfort.

Practical tips to help

We recognise that we are in your home to make you as

comfortable as possible. However, in order to assist with your care it would be appreciated if:

Your district nurses’ notes are available for use.

Your nurse has access to bed linen, towels etc for your use.

A lamp or reading light is available for use at night.

A kettle is available for your nurse to make a hot drink. They

will provide their own food.

A comfortable chair and suitable heating is available,

especially at night.

Your nurse is given access to washroom facilities (including

liquid soap and a separate hand towel) and toilet.

A smoke-free environment is provided for the nurse to work

in.

We are equipped to deal with occasional spillages, but we

may require access to disposable cloths and detergent.

WIDER HOSPICE TEAM

Doctors

Tel: 0117 915 9470

The Hospice has a permanent Senior Medical Team of doctors.

They provide specialist medical support to all our clinical services. They also supervise specialist qualified doctors in training.

The medical team provides 24/7 on-call support for our Inpatient

Unit, including out-of-hours admissions, and for our Advice Line

(which includes giving specialist advice to the medical staff working at North Bristol Trust).

24-hour telephone advice line

Tel: 0117 915 9430

The Hospice runs a specialist nurse-led telephone advice line

which is available 24-hours a day, every day of the year. As a

patient, you or your family can use this to seek advice. Healthcare

professionals, especially GPs and district nurses, also use this service when they need advice from the Hospice team.

Out of hours it is answered by the nurses working on the ward.

When they are very busy there may be a delay in their response

to you, but you can leave a message and they will get back to you

as soon as they are able. We keep records of calls to the Advice

Line so that everyone involved in your care knows what advice has been given to you.

AT THE HOSPICE We offer a range of services and care at the Hospice in Brentry.

Inpatient Unit

Tel: 0117 915 9431

Our Inpatient Unit has 18 beds for short stays of around two

weeks. Our professional team works together to provide palliative

care and support for patients who need more intensive help.

Some people will return home after their admission, whilst others

may be discharged to a nursing home, for longer-term care if

they are unable to return home. Other people are very ill and spend the last few weeks of their life in the Hospice.

The team meets each morning to discuss admission requests from

our community nurse specialists, GPs and hospital colleagues and

to plan admissions based on the urgency and complexity of

patients’ needs. This means that you may have to wait for a few

days before a bed is available. We also respond to urgent

requests out-of-hours and regularly admit patients during

weekends and Bank Holidays when this is appropriate and if we have a bed available.

Your privacy and dignity is very important to us. There are six

single rooms and six double rooms in the Inpatient Unit and,

where possible, we aim to meet your privacy needs. However, we

cannot always offer a single room and we have to consider each

individual’s requirements. If you are sharing a room, we can make arrangements for you to have private conversations.

Each bed has a television, DVD and CD player which you can use

free of charge. Free wireless internet access is available so that

you or your family can use your laptop or tablet; please speak to

one of the team if you would like to use WiFi and we will give you a code.

If you are admitted to the Inpatient Unit, you will need to bring

any medicines you are taking. These will be looked after by our

nurses and will help us to review your symptoms and make any

adjustments. You will also need to bring your own toiletries,

shavers, nightwear and clothes. We provide all bedding and

towels, although you are welcome to bring your own if you wish. We do not provide a laundry service for patients’ clothing.

Visiting

If you are being admitted to the Hospice by ambulance, you will

enter directly onto the Inpatient Unit. All other entries (e.g for

your visitors) are via the main entrance which is open from 8am to 8pm.

Visiting hours are 11am to 8pm but we are happy to discuss

visiting at other times. Entrance to the Inpatient Unit after 8pm is via the out-of-hours entrance located at the side of the building.

Sometimes we may need to limit the number of visitors in any one group.

We have limited overnight facilities for visitors which are available subject to discussion with our nurses.

Children are very welcome to visit but we do ask that they are

supervised at all times for their safety. Your pet can visit you but we ask that they are kept well under control.

Property

Your personal property remains your responsibility. If you have

valuable items or excess cash, we suggest you send these home with family, if possible.

There are beautiful gardens at the Hospice for patients, visitors,

staff and volunteers to enjoy. If you like to get dressed during the

day and go out into the gardens, please ensure you have a coat

and suitable footwear. If you need to remain in bed, we can move your bed outside for you to get some fresh air if you wish.

Day Services

Tel: 0117 915 9469

Day Services aims to provide a therapeutic environment that

increases your sense of confidence and empowerment in living with your illness.

If you are referred to Day Services, you will go to the Hospice one

day a week for 12 weeks, normally arriving at 10am and leaving at 3pm.

The team offers:

Nurses and doctors who offer advice on symptoms that may

be troubling you.

Individualised care with access to a wide team with

specialised skills including physiotherapists, occupational

therapists, psychological therapies, social workers and

spiritual support.

Informal discussion groups looking at issues relevant to you,

such as appetite, mouth care, anxiety and breathlessness,

sleep, maintaining independence, skin care and oils, planning

for the future, and understanding and managing medicines.

The chance to learn relaxation skills and participate in gentle

exercise and Tai Chi.

The opportunity to receive complementary therapies with

medical referral.

An enjoyable day, where you feel supported by healthcare

professionals and volunteers and the shared experiences of

other patients.

Transport

If you do not have access to transport we can offer support to

access all our services. Our volunteer drivers require you to be

able to get in and out of their car independently. For those with

mobility difficulties, we have our own wheelchair adapted mobility vehicle.

Fatigue and Breathlessness Management Course

We run courses to help you to manage your fatigue and

breathlessness more effectively and regain a sense of control.

Courses focus on different areas of your life, such as energy

levels, exercise, appetite, sleep, breathing control and relaxation,

and are run by a physiotherapist, an occupational therapist and a

nurse. Sessions last for two hours and are normally held on

Tuesday mornings but this may vary. If you would like to find out more, please talk to your community nurse specialist.

Complementary Therapies

Tel: 0117 915 9433

Complementary therapies are available to our referred patients.

They can help you to relax, help with sleep problems and

generally help you to feel better about yourself at difficult times.

The team of highly qualified volunteers and employed

complementary therapy coordinators can provide the following therapies:

Aromatherapy

Reflexology

Massage

Gentle touch

If you would like to use complementary therapies, you will need

an ‘internal’ referral by another member of the Hospice team, such as your community nurse specialist or doctor.

Reception and coffee shop

Our reception desk is open from 8am to 8pm and is supported by staff and volunteers.

They will help you to feel at home at St Peter’s Hospice, introduce

you to the right staff members, direct you to the right rooms and help you over the telephone.

Our reception area also has a coffee shop, offering drinks, cakes

and snacks. The coffee shop is open from 10.30am to 6.30pm Monday to Friday, 11am to 5pm weekends and Bank Holidays.

Patient Smoking at Brentry

The Hospice is a non-smoking facility and we thank you and your

visitors, families and carers for your cooperation. For those

patients that do smoke there is a designated area outside the

Inpatient Unit. If you are not independently mobile and would like

to use this facility, we ask that your family or friends take you

there. The designated smoking area is not accessible in the dark

and overnight when the building is alarmed. We understand that

not being able to have a cigarette during these times can be

stressful if you smoke frequently. To help, we can offer nicotine inhalators, nicotine patches and gum.

ADDITIONAL SUPPORT

We offer a range of additional services to support you.

Patient and Family Support

Tel: 0117 915 9454

Patient and family support is provided by a small group of

services that collectively supports individuals and families who

may be struggling to cope with the challenges of serious illness.

We offer support on a one-to-one basis, with families or in groups.

The Patient and Family Support services accept referrals for patients, carers and families already known to the Hospice.

Social Work

Our social workers can offer a listening ear, information on

statutory rights and advice on care at home or in a nursing home.

They may put you in touch with other specialists, such as benefits advisors.

Psychological Support

When patients are referred to the Hospice it can be a difficult time

for them and their families. Our aim is to help you express and

explore how you are feeling. We may use art, music or talking therapies to do this.

Spiritual Care

Our spiritual care team helps people to explore questions of

meaning and purpose. For some, this may include aspects of a

religion or faith, but this is not always so. They can also help you

to plan for the future and to make links in the community with religious and other groups.

Bereavement Support

We continue to offer support to families and carers through

bereavement if they wish. Support is offered by a team of trained

volunteers and via groups. Some people find it very useful to

have the opportunity to meet others in a similar situation to share

their experiences. Both individuals and family groups including children can be supported.

Groups

Patient and Family Support services offer a range of therapeutic

groups including carers groups. Carers groups offer an

opportunity to meet up with others in a similar situation for

informal discussion and support. Often carers are partners or

spouses but they may also be members of the extended family or friends.

Physiotherapy and Occupational Therapy

Our team of physiotherapists and occupational therapists work

with patients and their families to set goals, to enable people to

remain as independent as possible and to increase a sense of

wellbeing and control. They emphasise the ‘doing’ rather than the

‘being done to’ and this can help restore a sense of purpose and confidence. They focus on:

Advice about mobility and function.

Practical strategies to help families/carers to support patients

at home.

The provision of specialist equipment.

Techniques to cope with fatigue and breathlessness.

They play a key role in helping patients and families prepare for a

return home from the Inpatient Unit and work with patients in the

day hospice and in the community.

Hospice Volunteers

Tel: 0117 915 9448

St Peter’s Hospice volunteers enable us to continue to provide our

high standards of care and support for patients and their carers.

Our volunteers work in almost every area of the Hospice. They all

sign our confidentiality policy and work alongside us to make sure you are well looked after.

Hospice neighbours are a group of volunteers who offer social and

practical support in your home. You can find out more about their services by calling 0117 915 9448.

COMMENTS, COMPLIMENTS AND COMPLAINTS

Your feedback

As an organisation our aim is to provide the best possible services

to anyone who has contact with us. This may be within the Hospice, in the community, in our shops or at fundraising events.

We are committed to providing a quality service to all our

patients, carers and visitors. To do this, we need to continuously

look for ways of improving the way we work. You are in the best

position to judge how we are doing and we would like you to tell

us when we get it wrong. We regularly ask patients and their

family members to help us on particular subjects as they arise so

you may be asked for your comments and opinions about aspects

of the Hospice. There are also feedback cards around the Hospice building and postboxes for you to use.

We strive not to give cause for complaint but every one is

recorded and acted upon. Quite often we can resolve a complaint

immediately. If not, we will investigate your complaint fully and deal with it quickly and confidentially.

IWantGreatCare

You can make a complaint, comment, suggestion or compliment

about an area of our work by completing a short on-line survey at iWantGreatCare. Visit stpetershospice.org.uk/ iwantgreatcare

Alternatively you can do this by writing a letter and passing it to a

member of staff, leaving it at reception or posting to the address below:

The Director of Patient Care


Charlton Road

Brentry

Bristol BS10 6NL

by telephone

Tel: 0117 915 9400

Fax: 0117 915 9473

What happens to your comments and complaints?

When we receive any adverse comment the Director of Patient

Care will review the complaint and ask the most relevant manager

to make contact with you to listen to your concerns in more

detail. If we need to do a detailed investigation we may need up

to 20 working days to do this. We will then contact you again to

let you know the outcome of the investigation. Investigations can

sometimes show us where we can change and improve our

practice; we will ensure we inform you of any changes we will

make in the future. We hope you will be reassured by the

outcome, but if not you can meet with one of the Clinical Directors to discuss further.

If for any reason you are not happy with the outcome of the

complaint process, you can contact the Chairman of Trustees or the Care Quality Commission for further help and advice.

South West Region

Care Quality Commission

Citygate

Gallowgate

Newcastle upon Tyne

NE1 4PA

Tel: 03000 616161

Email: [email protected]

St Peter’s Hospice is required to provide evidence each year to

demonstrate compliance with healthcare standards and is

mailto:[email protected]

inspected regularly. The results of inspections are published via our website and also on the CQC website at www.cqc.org.uk.

CQC as part of their inspections may wish to make contact with

you or your family to ask about your experience of using our services.

We publish our quality accounts on NHS choices as well as on our website at www.stpetershospice.org

FIND OUT MORE ABOUT ST PETER’S HOSPICE We are a local charity and all of our care is provided free of

charge, but it costs us around £19,000 a day to provide that care.

For most of this money we rely on Gifts in Wills, donations, fundraising and our shops.

If you would like to receive our newsletter and keep in touch with what we’re working on and how you can support us please:

Call the Fundraising Team on 01275 391 400.

Or email becky.mitchell@ stpetershospice.org You can also follow us on Facebook and Twitter.

Your story

As Bristol’s only adult hospice it is helpful to let the community

know about our work and we are always interested in hearing

patients’ stories. If you would like to tell your story about the care

that you are receiving at the Hospice for use in the local press

please contact John Flanagan by emailing [email protected] or telephoning 07549 487822.

http://www.cqc.org.uk/

http://www.stpetershospice.org/

ST PETER’S HOSPICE KEY CONTACTS

24-hour telephone Advice Line Tel: 0117 915 9430

Access Team Tel: 0117 915 9494

Community Nurse Specialist Tel: 0117 915 9493 (office hours; or call the Advice Line out of hours and at weekends)

Hospice at Home Tel: 0117 915 9436 (8am-6pm Monday to Friday; 8am-4pm weekends and Bank Holidays)

Day Services Tel: 0117 915 9469 (Monday to Friday)

Inpatient Unit Tel: 0117 915 9431

Medical Team Tel: 0117 915 9470

Complementary Therapies Tel: 0117 915 9433

Patient and Family Support Tel: 0117 915 9454

Hospice Neighbours Network Tel: 0117 915 9448

Main switchboard Tel: 0117 915 9400

Fundraising Office Tel: 01275 391 400


Charlton Road

Brentry

Bristol

BS10 6NL

Tel: 0117 915 9400 Fax: 0117 915 9473

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