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St Christopher’s Community Palliative Care and Outpatient Services a rehabilitation gym a hairdressing salon an information area with PCs and internet access.yourself feeling alone with your experiences of theillness. There are various different ways in whichSt Christopher’s can help you with your concerns.MedicationWhat emotional and psychological caredoes St Christopher’s provide?If you are spending the day with us, please bring anymedication with you and feel free to discuss any issuesyou may have with your St Christopher’s nurse.CaféYour St Christopher’s nurse will give you time to talkabout how you feel about what has happened and canrefer you to any of our services, including:Social workersWhile you wait for your clinic appointment or groupsession, relax and enjoy a cup of coffee, tea, or somecafé-style food.Rehabilitation Gym (Sydenham)This purpose-built gym aims to help people maintaintheir strength through gentle exercise. Groupsavailable include Breathlessness Management Service,Pilates and Circuits. All groups are supervised by aphysiotherapist.Creative and complementary therapiesBoth centres have a range of music and arts therapiesavailable for one-to-one appointments and groupprogrammes. Massage and relaxation therapy isavailable. All our therapists are registered to practicewith the Complementary and Natural HealthcareCouncil.Emotional andpsychological careBeing diagnosed with a serious illness can affect manyaspects of your life, including how you feel aboutyourself and your relationships with other people. Itcan affect your relationships and also revive problemsfrom the past. Both the person who has the illness andthose caring for them can find that it helps to talk toeach other about how they feel about the changesin their lives. Sometimes you need to talk about yoursadness, anger or worries about what has happened toyou.However, you may find it difficult to talk as openlywith each other as you would like to because you areconcerned about upsetting each other. You may findSt Christopher’s social workers have particular expertisein helping with emotional or family difficulties. It can behelpful to talk to someone who is not personally closeto you. The social worker can see you on your ownor with anyone you chose; carers, family members orfriends. They can help you say things to those close toyou that you want or need to say. They can also helpyou to talk about practical planning.Cognitive behavioural therapy (CBT)CBT is brief problem-focused therapy that can helppeople regain a sense of control as well as identifyingways of coping with their difficulties. The averagecourse of CBT lasts for between four to six sessionsand is provided by a qualified CBT therapist at theSydenham site.PsychiatrySt Christopher’s has a Psychiatry Team which hasexpertise in helping people to manage particularlydifficult emotional problems arising from living with aserious illness.Art and music therapy and group programmesBoth of our centres have various therapies andactivities that many people find helps them to feel lessalone with their illness, including relaxation and supportgroups.Children and young peopleChildren and young people also need help inunderstanding the illness and its effects. Adults maynot talk to children because they are concerned aboutprotecting them. However, even very young childrenfind it helpful to talk about their own questions,worries and fears. The St Christopher’s social workerscan help you and your children or grandchildren in St Christopher’s May 2016. All rights reserved. No part of this document or its contents may be copied or reproduced by any means without the express permission of St Christopher’s.7

St Christopher’s Community Palliative Care and Outpatient Serviceshaving these conversations and give you informationabout booklets and activities to support you. TheSt Christopher’s social workers can also help withplanning for the future care of children.Spiritual and religious careSt Christopher’s welcomes everyone – whatever theirbeliefs – and encourages people to feel free to expresstheir spirituality or practise their religion in their ownway.St Christopher’s is committed to ‘total care.’ This meansthat whatever is important for each individual personmatters to us. You and those close to you may havequestions or concerns which are just as distressing asthe physical symptoms of the illness. If you would findit helpful we can arrange for the hospice chaplain tocontact you and arrange a visit.The chaplain and his team work with clergy andleaders from many faiths, denominations and religiouscommunities in the area. They can, if you wish, arrangeto visit you and your family at home informally to meetany particular religious needs.If you are visiting the Sydenham site, you will find thePilgrim Room provides a quiet space to think, meditateor pray. There are books of poetry and photographsand faith texts you may wish to use. You may light acandle or record your thoughts in the large MemoryBook on the table. At the Bromley site a similar spaceis provided in the Quiet Room where a candle can alsobe lit.Information for patientsand carersThe following information leaflets are available ateither centre and can also be downloaded from ourwebsite: Additional information on medicines used insymptom control Advance care planning Barrier nursing Bereavement Breathlessness Candle: Children and funerals Candle: Children, young people and loss Candle: How to help your bereaved child8 Candle: Someone close has died Candle: Someone has died suddenly Caring for someone with advanced dementia Choosing and moving to a care home Circuit classes group Clostridium difficile (C.diff) Coming to St Christopher’s Hospice as an inpatient Community support volunteers Complementary therapies Consent – what you have a right to expect Coping with breathlessness Coping with dying Cornea and tissue donation Difficulty sleeping Fatigue and breathlessness group Fluids and the use of artificial hydration Frequently asked questions about blood transfusions Frequently asked questions about cardio-pulmonaryresuscitation (CPR) Frequently asked questions about morphine Frequently asked questions about ‘next of kin’ andpower of attorney Frequently asked questions about the SupportiveCare Programme Healthcare associated infection – how you can helpreduce it Help during your bereavement How to complain or comment about our services Information for carers of St Christopher’s patients Methicillin Resistant Staphylococcus Aureus (MRSA) Pilates mat/chair work group Preparing for a funeral Social work and welfare for the St Christopher’sGroup The Anniversary Centre The bathing and hairdressing service atSt Christopher’s Hospice The Caritas Centre Transport and St Christopher’s Anniversary Centre Why won’t they eat? Your bereavement: claiming welfare benefits Your information: how we use and keep it.NHS continuing careSt Christopher’s patients are sometimes eligible for‘NHS continuing care’. NHS continuing care is thename given to a package of care which is arranged St Christopher’s May 2016. All rights reserved. No part of this document or its contents may be copied or reproduced by any means without the express permission of St Christopher’s.

St Christopher’s Community Palliative Care and Outpatient Servicesand funded solely by the NHS. You can receivecontinuing healthcare in any setting, includingyour own home or a care home. NHS continuinghealthcare is free, unlike help from social services forwhich a financial charge may be made depending onyour income and savings.In your own home, continuing care means thatthe NHS will pay for healthcare and personal care,for example, help with bathing, dressing and somenight nursing care. In a care home, the NHS alsopays for your care home fees, including board andaccommodation.Eligibility for continuing care is not dependent on aparticular disease, diagnosis or condition, nor on whoprovides the care or where that care is provided. Ifyour overall care needs show that your primary needis health-related and includes a rapidly progressingcondition, you should qualify for NHS continuinghealthcare. Funding decisions are made by your localclinical commissioning group. This is subject to review,and should your care needs change the fundingarrangements may also change.To assess whether your primary need is healthrelated, all of your care needs are looked at andthen related to four key indicators – the nature ofyour needs, their complexity, their intensity andunpredictability.Applications for NHS continuing care can be made byyour St Christopher’s nurse.Coordinate My CareWhat is Coordinate My Care?As a patient you may well have views about yourcare: what you would like to happen, where youwant to receive care, and even things you would liketo avoid.Coordinate My Care is a free service, which supportsyou to record this information. A doctor or a nursewill talk to you about your illness and wishes andcreate a care plan that is available to help you. Allthese details will be entered onto Coordinate MyCare, which is an electronic record. It can be accessedby your GP, community nurses, hospital team, out-ofhours doctors, specialist nurses, London AmbulanceService and NHS 111 (NHS 111 is the unscheduledemergency telephone number that operates dayand night).If you need help, the doctors and nurses caring for youeither in the community or in the hospital will be ableto access the information about you and know whatcare they should deliver to you.Do you need my permission to include mydetails on Coordinate My Care?Your Coordinate My Care plan is set up only with yourconsent and is flexible so you can alter your wishes atany point should they change.What are the possible benefits ofCoordinate My Care?Coordinate My Care will give you an opportunity tohave your decisions and expressed wishes about yourcare recorded. This information will be available to allprofessionals who are looking after you. The fact thateveryone can see your care plan and wishes will helpto ensure that any care you receive is in line with whatyou’ve decided. You have complete choice whether ornot to participate.How can I access the information about meon Coordinate My Care?When your entry is created you will be offered apaper copy. It is up to you whether you take a copyor not. You can request this at any time. You justneed to ask the nurse or doctor who discusses theCoordinate My Care record with you to print you offa copy.What are the possible disadvantages oftaking part?Some of the questions the care professional may needto ask you could be sensitive. The nurse/doctor willmake every effort to discuss your care and wishes ina sensitive manner, however if you find any of thequestions upsetting, you do not need to answer. St Christopher’s May 2016. All rights reserved. No part of this document or its contents may be copied or reproduced by any means without the express permission of St Christopher’s.9

St Christopher’s Community Palliative Care and Outpatient ServicesWhat happens if I agree to have my detailsput on Coordinate My Care?Coordinate My Care works like this:One of your care professionals (such as your GP,doctor, specialist nurse or community nurse) will: have a discussion with you about your condition, andwhether you have any particular views on your futurecare ask you if you wish to have your details placed onCoordinate My Care if you say yes, they will input your details, includingyour age, address, next of kin, diagnosis, medicationsand your specific wishes onto Coordinate My Care. create a personalised care plan to let other doctorsand nurses know about your condition and thetreatment plans in place to care for you.The Coordinate My Care system will: send an alert to London Ambulance Service, NHS 111and the out-of-hours GP service in your area tellingthem that information about you is available ifneeded give care professionals access to your record (but onlywhere they have a legitimate professional relationshipwith you) offer you a paper copy of your Coordinate My Carerecord to check and keep.Is Coordinate My Care confidential?Yes, your record is confidential. Only professionalsinvolved in your care and issued with a secure username and password will be able to see your details onCoordinate My Care. Your record will be accessed whenyou need help or advice.In addition, it is a good idea to let your carers andnext of kin know that you have a Coordinate My Carerecord so that everyone knows your wishes about yourcare. That way everyone can work together to helpyou.From time to time, information held on CoordinateMy Care may be used to look at trends in servicesin different areas. However, your name will not bedisclosed. You will not be identified in any report orpublication that is produced about Coordinate MyCare.10If there are any specific queries relating to your recordwe may need to include your details in the report.To ensure that the information on Coordinate My Careis of high quality, care and data managers employed byCoordinate My Care will be able to view your recordfor monitoring purposes only. They will have secureuser names and passwords.What happens if I do not wish to take partin Coordinate My Care?You will never be included without being asked first.You can change your mind at any time. All you have todo is let one of your care professionals know.Should you decide to leave Coordinate My Care, yourrecord will be closed down, so that professionals canno longer access your record.Whatever you decide, everyone will still give you thebest care possible with the information they have.What should I do if I want to update myrecord, for example, if I move or if mywishes change?Your healthcare team will regularly discuss your healthissues with you. If your wishes change at any time theywill update your Coordinate My Care record. Pleaseinform your GP or District Nurse if you change GP ormove to a new address.Please contact the Coordinate My Care team on020 7811 8513 or email coordinatemycare@nhs.net ifyou have any questions about how Coordinate MyCare works. If you need medical or nursing care adviceplease contact your GP/district nurse/clinician.www.coordinatemycare.co.ukThis Coordinate My Care section was reproduced with the kind permissionof The Royal Marsden NHS Foundation TrustSt Christopher’s and yourpersonal informationWe receive personal information about you fromyou, your family and other services. We need thisinformation so that we can provide you with propercare and treatment.Members of the St Christopher’s Community Teamlooking after you may share your personal information St Christopher’s May 2016. All rights reserved. No part of this document or its contents may be copied or reproduced by any means without the express permission of St Christopher’s.

St Christopher’s Community Palliative Care and Outpatient Serviceswith each other. This team may include nurses,doctors, therapists, social workers, pharmacists andclerical support staff plus students and trainees inmedicine or other health and social care professionalswho are looking after you.Often it is necessary to share your informationwith professionals in other services who may bedirectly involved with your care or if you needtreatment elsewhere. Your information will only bemade available if there is a genuine need to do so.Such professionals might, for example, include GPs,ambulance services, social care services.We will not share information about you with yourfamily or friends without your consent.Access to your medical records – the ‘rightof access to personal data’If you would like to have access to your medicalrecords, please talk to one of the hospice nurses ordoctors responsible for your care. Most of our recordsare electronic and one of our staff can help see yournotes on a hospice computer or we can arrange for apaper record, but this may take a few days.Financial help when youare sickThe Welfare Department is available to help you getthe financial help to which you are entitled.Below is a list of benefits you could be entitled to asa patient of St Christopher’s. These benefits are notcharity – they are your right.We hope that the following information is clear, butif you have any questions or you need help gettingany claim forms, please telephone the hospice and askto speak to the welfare officers who will be happy toadvise you further. You can contact them between9am and 5pm, Monday to Friday on 020 8768 4500(Sydenham) or 01689 825755 (Bromley).Attendance Allowance (AA)Personal Independence Payment (PIP)Disability Living Allowance (DLA)Attendance Allowance is paid to people aged 65 andover who need help with personal care (i.e. help withwashing, dressing etc).Personal Independence Payment (PIP) is paid to peopleunder 65 when they first claim and who need helpwith the tasks of daily living. There is also an additionalmobility component of PIP if you have difficulty gettingaround. PIP will continue to be paid after age 65 if youget it before your 65th birthday.PIP replaced Disability Living Allowance (DLA) in 2013for new claimants. Some people already claimingDLA may continue to get it instead of PIP. However,a gradual transfer to PIP for these claimants isplanned for the future. These benefits are tax-freeand paid on top of any other benefits, sick pay orpensions you may be getting. They can also be paidif you are still working. Getting either AA, PIP or DLAmay mean that you are automatically entitled toother benefits.Special rules for claiming Attendance Allowance(AA), Personal Independence Payment (PIP) andDisability Living Allowance (DLA)There are special rules for people who have anuncertain future because of their illness and peoplereferred for hospice care, whether as an outpatientor an inpatient. These mean that you may have anautomatic right to be paid the highest rate of AA orenhanced rate for daily living of PIP or the highestrate of the care component of DLA. If you are notalready getting the highest rates, let yourSt Christopher’s nurse know and he/she will helpmake the claim if the special rules apply or refer youto the Welfare Office if you need to make a claimunder the usual rules.Benefits paid if unable to work throughsicknessStatutory Sick PayIf you are employed but off sick you will be paidStatutory Sick Pay as part of your wages/salary forthe first 28 weeks you are off work. You may also be St Christopher’s May 2016. All rights reserved. No part of this document or its contents may be copied or reproduced by any means without the express permission of St Christopher’s.11

St Christopher’s Community Palliative Care and Outpatient Servicesentitled to Income Support to top this up if you havea low income and savings under 16,000. When theStatutory Sick Pay ends you should claim Employmentand Support Allowance from the Department for Workand Pensions.compensation, paid in addition to some of the benefitsabove. Please contact one of our welfare officers.Employment and Support AllowanceIf you (or your partner if you have one) are working for16 hours a week or more or getting Statutory Sick Payand you are on a low income you may be able to claimWorking Tax Credit to help top up your wages. Theamount you get depends on your income (as well asthat of your partner, if you have one). Your entitlementshould increase as a result of your illness. Contact theTax Credit Helpline for a claim form.Employment and Support Allowance (ESA) is paidif you are under pension age and unable to workbecause of illness and your Statutory Sick Pay hasended or you are not entitled to it. ESA replacedIncapacity Benefit in 2008. There may be a fewpeople still getting Incapacity Benefit who have notbeen moved to ESA.You may get extra work sick pay o

St Christopher's Community Palliative Care and Outpatient Services Remembering with St Christopher's 31 Welfare benefits advice 31 Your feedback on our services 31 How to make a complaint 31 Your experience of our care 31 SKIPP 31 User Forum 31 Supporting diversity 32 Support St Christopher's 32