stpetershospice.org

PatientGuide

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Confidentiality and Data ProtectionUnder the Data Protection Act(1998), we need to make youaware that we keep electronicand sometimes paper recordsin relation to your care. Theinformation we hold includesyour name, address, date ofbirth and your medical history.This information is shared, withyour permission both internally(to ensure appropriatecommunication), and externally(for example, with otherhealthcare teams or socialservices) where we think thiswill benefit your care.Information will only be sharedon a ‘need to know’ basis. If,for any reason, you do notwish your information to beshared with others in this way,please let us know, and we willrespect your wishes. There arerare exceptions where the lawrequires us to shareinformation with other parties.

Similarly, if you do not wish usto discuss your care with familymembers or other people closeto you, please let us know.

The Data Protection Act 1998allows you to see your records,should you wish to do so. Ifyou wish to have access toyour medical records, pleaseput this in writing and addressit to the Direct of Patient Care.A small charge will apply forthis service to cover ouradministration costs.

Contents3 Welcome to St Peter’s Hospice

4 About St Peter’s Hospice

5 Access to Hospice services• Who is eligible for referral to

the Hospice?• Who can make a referral to

the Hospice?• What happens next?• On-going contact with the Hospice

6 At home and in the community• Community Nurse Specialists• Hospice at Home

8 Wider Hospice Team• Doctors• Physiotherapy and

Occupational Therapy• 24-hour telephone advice line

10 At the Hospice• Inpatient Unit• Visiting• Property• Day Services• Transport • Fatigue and Breathlessness

Management Course• Reception and coffee shop• Patient Smoking at Brentry

14 Additional support• Psycho Social Spiritual Team• Social Work• Art and Music Therapy• Spiritual Care • Bereavement Support• Groups• Complementary Therapies

16 Hospice Volunteers

17 Your Feedback

19 Finding out more

20 Contacts

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Welcome to St Peter’s Hospice Now that you have been referred to St Peter’s Hospice, andaccepted the offer of our care, we will do our very best tolook after you, and your family, in every possible way.

St Peter’s Hospice is a charity providing free care for those withcomplicated needs often towards the end of life but nearlyalways needing relief from distressing symptoms or worries.We provide this care to the people of Bristol, SouthGloucestershire, North Somerset and part of Bath and NorthEast Somerset (BANES). Together with our healthcare partners,such as your GP, District Nurses and local hospitals, we want togive you the very best of health and social care.

We pride ourselves on our high standards of care; as you wouldexpect we meet National Guidelines (such as those provided bythe NHS), and we are answerable to the Care QualityCommission, who ensure we provide care of the highest quality.

We have a variety of services atthe Hospice in Brentry but alsoprovide many hours of care bytelephone, in the communityand in the homes of ourpatients. I hope you will find thisbooklet useful to familiariseyourself with all the services weprovide and those who providethem. I would also like to inviteyou, and your family, to visit usat Brentry for an informal lookaround when it suits you.

Simon CaraffiChief Executive

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About St Peter’s HospiceSt Peter’s Hospice is a Bristol charity that provides care andsupport for adults with life-limiting illnesses. We aim toimprove the quality of their living and dying, while alsoextending support to their families and carers.

We do this in many different ways, in the community as wellas at our hospice building at Brentry; and by workingalongside all other health and social care services. We alsoprovide education for other health and social careprofessionals to support them in their work.

All of our care is provided free of charge but it costs us around£18,000 a day to provide that care. For most of this moneywe rely on Gifts in Wills, donations, fundraising and our shops.

ABOUT ST PETER’S HOSPICE

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Access toHospice services

Who is eligible forreferral to the Hospice?l Any patient over the age of 18with an active and advanced life-limiting disease such as cancer,heart disease, lung disease andneurological diseases may bereferred for Hospice support atsome point in their illness.

l Patients are often referred at atime when they are close tothe end of active treatment, orsimply when they haveparticularly difficult symptomsor problems.

l Patients who are nearing theend of their life may also wantto discuss their preferences forhow and where they die, andknow what additional supportthe Hospice may be able tooffer them.

Who can make a referralto the Hospice?Patients are usually referred to theHospice by a health or social careprofessional such as your GP,district nurse or hospital palliativecare team. Your GP must alwaysbe aware of the referral and inagreement with it.

What happens next?Once you have been referred to theHospice, a nurse from our AccessTeam will telephone you to establishthe urgency of your referral and toexplain the full range of servicesthat the Hospice offers. The accessnurse can also help you with anyurgent issues and offer guidanceand advice. After this you may see acommunity nurse specialist or havean outpatient appointment. Somereferrals are for specific services andthe Access Team will make sure thatyou see the right team. The AccessTeam also runs the advice lineduring normal working hours and atweekends.

On-going contact withthe HospiceFollowing assessment and whateverinitial support may be most helpful,some patients are then able tomanage without on-going Hospicecare. They may be discharged, in theknowledge that they can contactthe Hospice at any time in thefuture to ask for further help.

Other patients may remain inregular contact with the Hospice.

REFER

RAL A

ND ACCESS

Tel: 0117 915 9494

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At home and in the communityWe work in the community to care for patients in any setting wherever they are living.

Community NurseSpecialists

Our community nurse specialistsare experienced nurses withadditional training in palliative careand communication skills. We havefour teams of community nursespecialists who work from differentlocalities so that they are near towhere people live. They workalongside GPs and othercommunity nurses in their area andmeet them regularly to discusspatients’ symptom management,support and care. They also workwith hospital teams.

A community nurse specialist willvisit you where you are living,

whether this is your own home,community hospital or nursing orresidential home. They will keep incontact with you through visitsand telephone calls.

The community nurse specialistsaim to help you to manage yoursymptoms and enjoy the bestpossible quality of life. They alsoprovide emotional support and canhelp you make decisions aboutyour current and future care. Thecare they offer is focussed on youand your family and carers whoare supporting you.

The community nurse specialistteams work very closely with thewider Hospice teams and meetevery week to consider furtherinput that might be helpful. Thiscould be a home visit or outpatientappointment with a senior doctoror referral to other services such asDay Hospice, the Psycho SocialSpiritual Team, Hospice at Home orthe Inpatient Unit for an admission.

AT HOME AND IN

THE COMMUNITY

Tel: 0117 915 9493

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Hospice at Home

Our Hospice at Home serviceprovides short-term hands-onnursing care to you in your ownhome. This care is provided byregistered and unregisterednurses who are trained andexperienced in the care of thedying and their families.

We offer different levels of caredepending on your needs. Thismay be respite care for a morning,afternoon or overnight to enableyour carers to get some rest or togo out. Alternatively, the team canhelp when you come out ofhospital or if you are waiting foradmission to the Hospice. In thelast week of life, we may evenoffer 24-hour care in your home, ifwe have availability and this isrequired. We will contact the carerand set up a rota for several shifts.

The nurses will work on a shiftsystem as follows:

6.45am – 14.15pm

13.45pm – 10.15pm

9.45pm – 7.15am

Day respite shifts are agreed at thetime of booking and are usuallyoffered at short notice dependingon availability of nurses.

The nurses will liaise and updateeach other at each shiftchangeover. Every effort will bemade to provide continuity from

the established team. However,they also work closely with othercare agencies.

The GP and District Nurse willcontinue to visit and monitor thepatient’s symptom control andcomfort.

AT H

OME A

ND IN

THE CO

MMUNITY

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

Practical tips to helpWe recognise that we are in your home tomake you as comfortable as possible.However, in order to assist with your care itwould be appreciated if:

l Your district nurses’ notes are availablefor use.

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

l A lamp or reading light is available foruse at night.

l A kettle is available for your nurse tomake a hot drink. They will providetheir own food.

l A comfortable chair and suitableheating is available, especially at night.

l Your nurse is given access to washroomfacilities (including liquid soap and aseparate hand towel) and toilet.

l A smoke-free environment is providedfor the nurse to work in.

l We are equipped to deal with occasionalspillages, but we may require access todisposable cloths and detergent.

This service is free to the patient.

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Doctors

The Hospice has a permanentSenior Medical Team of doctors.They provide specialist medicalsupport to all our clinical services.They also supervise specialistqualified doctors in training.

The medical team provides 24/7on-call support for our InpatientUnit, including out-of-hoursadmissions, and for our Advice Line(which includes giving specialistadvice to the medical staff workingat North Bristol Trust).

Physiotherapy andOccupational TherapyOur team of physiotherapists andoccupational therapists work withpatients and their families to setgoals, to enable people to remainas independent as possible and toincrease a sense of wellbeing andcontrol. They emphasise the‘doing’ rather than the ‘being done

to’ and this can help restore asense of purpose and confidence.

They focus on:

l Advice about mobility andfunction.

l Practical strategies to helpfamilies/carers to supportpatients at home.

l The provision of specialistequipment.

l Techniques to cope withfatigue and breathlessness.

They play a key role in helpingpatients and families prepare for areturn home from the InpatientUnit and work with patients in theday hospice and in the community.

Tel: 0117 915 9470

WIDER HOSPICE TEAM

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WIDER HOSPICE TEA

M

On weekdays, weekends andbank holidays, advice line calls areanswered by the Access Team.During working hours, if you arealready receiving care from theHospice, your call will be dealtwith by the professional memberof staff who looks after you, suchas your community nursespecialist. We keep records of callsto the Advice Line so thateveryone involved in your careknows what advice has beengiven to you.

24-hour telephoneadvice line

The Hospice runs a specialistnurse-led telephone advice linewhich is available 24-hours a day,every day of the year. As apatient, you or your family can usethis to seek advice. Healthcareprofessionals, especially GPs anddistrict nurses, also use thisservice when they need advicefrom the Hospice team.

Tel: 0117 915 9430

Cardiopulmonary Resuscitation At St Peter’s Hospice we think it is important to involve you indiscussions about your future care, including decisions aboutcardiopulmonary resuscitation. Cardiopulmonary arrest meansa person’s heart and breathing stop. When this happens, it issometimes possible to restart their heart and breathing withcardiopulmonary resuscitation (CPR). Many of our patients willbe involved in discussions with their healthcare team whichresult in a Do Not Attempt Cardiopulmonary Resuscitation(DNACPR) decision. Please ask for our leaflet‘Cardiopulmonary Resuscitation Decisions at St Peter’sHospice’ if you want more detailed information about ourpolicy and how decisions are made.

Our policy on resuscitation states that in an emergency, ifthere is a chance of success and no DNACPR decision hasbeen made, we will attempt CPR. However, we do not haveadvanced equipment for CPR, such as a defibrillator, as it isvery rare that we would use this type of equipment.However, our staff are trained in first aid CPR and in thissituation a ‘999’ ambulance would also be called.

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AT THE HOSPICE Inpatient Unit

Our Impatient Unit has 18 beds forshort stays of around two weeks.Our professional team work togetherto provide palliative care and supportfor patients who need moreintensive help. Some people willreturn home after their admission,whilst others may be discharged to anursing home, for longer-term care ifthey are unable to return home.Other people on our Inpatient Unitare very ill and spend the last fewweeks of their life in the Hospice.

The team meets each morning todiscuss admission requests from ourcommunity nurse specialists, GPs andhospital colleagues and to planadmissions based on the urgency andcomplexity of patients’ needs. Thismeans that you may have to wait fora few days before a bed is available.We also respond to urgent requestsout-of-hours and regularly admitpatients during weekends and Bank

Holidays when this is appropriateand if we have a bed available.

Your privacy and dignity is veryimportant to us. There are sixsingle rooms and six double roomsin the Inpatient Unit and, wherepossible, we aim to meet yourprivacy needs. However, wecannot always offer a single roomand we have to consider eachindividual’s requirements. If you aresharing a room, we can makearrangements for you to haveprivate conversations.

Each bed has a television, DVD andCD player which you can use freeof charge. Free wireless internetaccess is available so that you oryour family can use your laptop ortablet; please speak to one of theteam if you would like to use WiFiand we will give you a code.

If you are admitted to the InpatientUnit, you will need to bring anymedicines you are taking. These willbe looked after by our nurses andwill help us to review yoursymptoms and make anyadjustments. You will also need tobring your own toiletries, shavers,nightwear and clothes. We provideall bedding and towels, with achoice of blankets or duvet,although you are welcome to bringyour own bedding and pillows ifyou wish. We do not provide alaundry service for patients’ clothing.

Tel: 0117 915 9431

At the HospiceWe offer a range of services and care at the Hospice in Brentry.

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AT TH

E HOSPICE

VisitingIf you are being admitted to theHospice by ambulance, you willenter directly onto the InpatientUnit. All other entries (e.g for yourvisitors) are via the main entrancewhich is open from 8am to 8pm.

Visiting hours are 11am to 8pm butwe are happy to discuss visiting atother times. Entrance to theInpatient Unit after 8pm is via theout-of-hours entrance located atthe side of the building.

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

We have limited overnightfacilities for visitors which areavailable subject to discussionwith our nurses.

Children are very welcome but wedo ask that they are supervised atall times for their safety.

Your pet can visit you but we askthat they are kept well undercontrol.

PropertyYour personal property remainsyour responsibility. However, if youhave valuable items or excess cash,these can be kept in our office safeand we will give you a receipt.

There are beautiful gardens at theHospice for patients, visitors, staffand volunteers to enjoy. If you liketo get dressed during the day andgo out into the gardens, pleaseensure you have a coat andsuitable footwear. If you need toremain in bed, we can move yourbed outside for you to get somefresh air if you wish.

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AT THE HOSPICE

Day Services

Day Services aims to provide atherapeutic environment thatincreases your sense ofconfidence and empowerment inliving with your illness. It is run bya team of experienced nurses and doctors.

If you are referred to Day Services,you will go to the Hospice oneday a week for 12 weeks, arrivingat 10am and leaving at 3pm.

The team offers:

l Nurses and doctors who offeradvice on symptoms that maybe troubling you.

l Individualised care with accessto a wide team with specialisedskills including physiotherapists,occupational therapists, a musictherapist, an art therapist, socialworkers and spiritual support.

l Informal discussion groupslooking at issues relevant to you,such as appetite, mouth care,anxiety and breathlessness,sleep, maintainingindependence, skin care and oils,planning for the future, andunderstanding and managingmedicines.

l The chance to learn relaxationskills and participate in gentleexercise.

l The opportunity to receivecomplementary therapies withmedical referral.

l An enjoyable day, where youfeel supported by healthcareprofessionals and volunteersand the shared experiences ofother patients.

TransportIf you do not have access totransport we can offer support toaccess all our services. Ourvolunteer drivers require you to beable to get in and out of their carindependently. For those withmobility difficulties, we have ourown wheelchair-adapted mobilityvehicle.

Tel: 0117 915 9469

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AT TH

E HOSPICE

Patient Smoking atBrentryThe Hospice is a non-smoking facility and wethank you and your visitors,families and carers for yourcooperation.

For those patients that dosmoke there is a designatedarea outside the InpatientUnit. If you are notindependently mobile andwould like to use this facility,we ask that your family orfriends take you there. Thedesignated area is notaccessible in the dark andovernight when the buildingis alarmed. We understandthat not being able to have acigarette during these timescan be stressful if you smokefrequently. To help, we canoffer nicotine inhalators,nicotine patches and gum.

Reception and coffeeshopOur reception desk is open from8am to 8pm and is supported bystaff and volunteers.

They will help you to feel at homeat St Peter’s Hospice, introduceyou to the right staff members,direct you to the right rooms andhelp you over the telephone.

Our reception area also has acoffee shop, offering drinks, cakesand snacks. The coffee shop isopen from 10.30am to 6.30pmMonday to Friday, 11am to 5pmweekends and Bank Holidays.

Fatigue andBreathlessnessManagement CourseWe run courses to help you tomanage your fatigue andbreathlessness more effectivelyand regain a sense of control.Courses focus on different areas ofyour life, such as energy levels,exercise, appetite, sleep, breathingcontrol and relaxation, and are runby a physiotherapist, anoccupational therapist and a nurse.Sessions last for two hours and arenormally held on Tuesday morningsbut this may vary. If you would liketo find out more, please talk toyour community nurse specialist.

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Additional supportWe offer a range of additional services to support you.

Psycho Social Spiritual Team

Our Psycho Social Spiritual Teamsupports individuals and familieswho may be struggling to copewith the challenges of seriousillness and the changes it brings.We offer support on a one-to-onebasis, with families or in groups.The Psycho Social Spiritual Teamaccepts referrals for patients,carers and families already knownto the Hospice.

The team is made up of a numberof different disciplines.

Social WorkOur social workers can offer alistening ear, information onstatutory rights and advice on careat home or in a nursing home. Theymay put you in touch with otherspecialists, such as benefits advisors.

Art and Music TherapyWhen patients are referred to theHospice it can be a difficult timefor them and their family. Musicand art can provide a way ofexpressing feelings at this time,when words may be hard to find.They can also be a way of helpingfamilies come together to exploreworries and concerns, or just toshare some creative timetogether.

SUPPORTIVE CA

RE

Tel: 0117 915 9454

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Spiritual CareSpiritual care is about helpingpeople to explore questions ofmeaning and purpose. For somethis may include aspects of religionor faith, but this is not always so.The spiritual care team can alsohelp you to plan for the future andto make links in the communitywith religious and other groups.

Bereavement SupportWe continue to support familiesand carers with bereavement ifthey wish. Support is offered by ateam of trained volunteers and viasupportive groups. Some peoplefind it very useful to have theopportunity to meet others in asimilar situation to share theirexperiences. Both individuals andfamilies, including children, can besupported.

The Department of Work andPensions also has a specialistteam which offers help andsupport. It can be contacted onthe following numbers:

Phone 0845 606 0265Phone 0845 606 0275 (Welsh)

Textphone 0845 606 0285Textphone 0845 606 0295 (Welsh)

SUPPORTIV

E CARE

GroupsThe Psycho Social Spiritual teamoffers a range of therapeutic groupsincluding carers groups. Carersgroups offer an opportunity to meetup with others in a similar situationfor informal discussion and support.Often carers are partners orspouses but they may be membersof the extended family or friends.

All groups are facilitated bymembers of the Psycho SocialSpiritual team. The groups generallymeet for two hours on a weeklybasis for six consecutive weeks. Formore information, please ask yourcommunity nurse specialist.

ComplementaryTherapies

Complementary therapies areavailable to our referred patients.They can help you to relax, helpwith sleep problems and generallyhelp you to feel better aboutyourself at difficult times. Theteam of highly qualified volunteersand an employed complementarytherapy coordinator can providethe following therapies:

l Aromatherapyl Reflexologyl Massagel Gentle touchIf you would like to usecomplementary therapies, you willneed an ‘internal’ referral byanother member of the Hospiceteam, such as your communitynurse specialist or doctor.

Tel: 0117 915 9433

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HOSPICE VOLUNTEERS

Hospice Volunteers

St Peter’s Hospicevolunteers enable us tocontinue to provide our highstandards of care andsupport for patients andtheir carers. Our volunteerswork in almost every areaof the Hospice. They all signour confidentiality policyand work alongside us tomake sure you are welllooked after.

Tel: 0117 915 9448

Hospice neighbours are agroup of volunteers whooffer social and practicalsupport in your home. Youcan find out more abouttheir services by calling0117 915 9448.

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Comments, compliments and complaintsYour feedbackAs an organisation our aim is toprovide the best possible servicesto anyone who has contact withus. This may be within theHospice, in the community, in ourshops or at fundraising events.

We are committed to providing aquality service to all our patients,carers and visitors. To do this, weneed to constantly look for waysof improving the way we work.You are in the best position tojudge how we are doing and wecertainly need you to tell us whenwe get it wrong. We regularly askpatients and their family membersto help us on particular subjects asthey arise so you may be askedfor your comments and opinionsabout aspects of the Hospice.There are also feedback cardsaround the Hospice building andpostboxes for you to use.

We strive not to give cause forcomplaint but every one isrecorded and acted upon. Quiteoften we can resolve a complaintimmediately. If not, we willinvestigate your complaint fullyand deal with it quickly andconfidentially.

You can make a complaint,comment, suggestion orcompliment about an area of ourwork by completing a short on-linesurvey at iWantGreatCare. Visit stpetershospice.org.uk/iwantgreatcare

Alternatively you can do this bywriting a letter and passing it to amember of staff, leaving it atreception or posting to theaddress below:

The Director of Patient CareSt Peter’s HospiceCharlton RoadBrentryBristolBS10 6NL

by telephone

Tel: 0117 915 9400Fax: 0117 915 9473

YOUR FEED

BACK

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What happens to yourcomments andcomplaints?When we receive any adversecomment the Director of PatientCare will acknowledge this withinfive working days and will write toyou again within twenty workingdays with a response to yourcomment. 20 days is required for afull investigation and you will receivea full response outlining the findings,unless there are complexities thatmake this impossible. In thesecircumstances we will write to letyou know of the delay, and whenwe can expect to complete theinvestigation. Often the result of aninvestigation leads us to change ourpractices and we will also let youknow what these are.

All comments and suggestionsmay also be used anonymously toreport to NHS commissioners andin publicity if this is required.

If you wish you can contact theCare Quality Commission foradvice or help.

South West RegionCare Quality CommissionCitygateGallowgateNewcastle upon TyneNE1 4PA

Tel: 03000 616161

Email:enquiries.southwest@cqc.org.uk

St Peter’s Hospice is required toprovide evidence each year todemonstrate compliance withhealthcare standards and isinspected regularly. The results ofinspections are published via ourwebsite and also on the CQCwebsite at www.cqc.org.uk. Wepublish our quality accounts on NHSchoices as well as on our websiteat www.stpetershospice.org

YOUR FEEDBACK

We are a local charity and all of our care is provided freeof charge, but it costs us around £18,000 a day toprovide that care. For most of this money we rely onGifts in Wills, donations, fundraising and our shops.

If you would like more information about the work of St Peter’s Hospice or any of our fundraising activities…

l Visit stpetershospice.org

l Call the Fundraising Team on 01275 391 400.

l Write to us at St Peter’s Hospice Fundraising Team, 2nd Floor, Block C, Estune Business Park, Wild Country Lane, Long Ashton BS41 9FH.

l Follow us on Facebook and Twitter.

Find out more about St Peter’s Hospice

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Revisio

n date: July 20

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Your story

As Bristol’s only adult hospice it is helpful to let the community knowabout our work. We are always interested in hearing patients’ stories –these are a powerful way of promoting the Hospice and helping othersto understand the importance of what we do. If you would like to tellyour story about the care that you are receiving at the Hospice for usein the local press please contact John Flanagan by emailingjohn.flanagan@stpetershospice.org or telephoning 07549 487822.

/stpetershospice @stpetershospice

Registered Charity No. 269177

/stpetershospice

@stpetershospice

24-hour telephone Advice Line Tel: 0117 915 9430

Access TeamTel: 0117 915 9494

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

Hospice at HomeTel: 0117 915 9436(8am-6pm Monday to Friday; 8am-4pm weekends and BankHolidays)

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

Inpatient Unit Tel: 0117 915 9431

Medical TeamTel: 0117 915 9470

Complementary Therapies Tel: 0117 915 9433

Psycho Social Spiritual Team Tel: 0117 915 9454

Hospice Neighbours Network Tel: 0117 915 9448

Main switchboardTel: 0117 915 9400

Fundraising OfficeTel: 01275 391 400

St Peter’s Hospice key contacts

stpetershospice.org

St Peter’s HospiceCharlton RoadBrentryBristol BS10 6NL

Tel: 0117 915 9400 Fax: 0117 915 9473

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