Oxford Centre for Enablement Information Booklet Continuing Disability Management Service C o n t a c t D e t a i l s Oxford Centre for Enablement Nuffield Orthopaedic Centre Windmill Road Headington Oxford OX3 7LD Main Reception Phone: Main Reception Fax: www.noc.nhs.uk 01865 227600 01865 227294 March 2004 Version 1.0 © 2003 Nuffield Orthopaedic Centre NHS CONTENTS • About the Oxford Centre for Enablement • What does the service provide? • The team roles • How long will I stay? • What happens next? • How can I make the most of my contact with the service? • What are my rights and responsibilities? • Giving consent • Access to Information—Your Health Record • Information about you and how we use it • Your Health Record • If you have Comments or Complaints • Further Information • Contact Details CORE VALUES We believe that disabled people should be respected and treated as full members of society. They should expect equal opportunities and the services will respect individual differences in culture, religion, race age and ability. Access to effective and efficient health and social care. Information that is appropriate, accessible, accurate, timely and relevant. To enable individuals to make informed choices and to participate in decisions that affect their lives. Choice about every aspect of their lives and if necessary assistance with the expression and implementation of their wishes. Participation in society and commensurate with their abilities. responsibilities Consultation and involvement in the planning of services along with users families, voluntary organisations with specialist expertise and other appropriate groups. When writing or speaking to the hospital, please quote your NHS number. The aim of this booklet is to provide information about the Continuing Disability Management Service at the Oxford Centre for Enablement. It is written for patients, families, friends and for professionals. It is designed to help answer some of the questions that you may have. If your questions are not addressed in this booklet , a member of staff will be happy to help you. ABOUT THE OXFORD CENTRE FOR ENABLEMENT The Oxford Centre for Enablement (OCE) is a purpose built centre which provides specialist neurological rehabilitation and disability services within Oxfordshire. The OCE is part of the Nuffield Orthopaedic Centre NHS Trust in Headington. The services included are the: • Neurological Rehabilitation Service. • Continuing Disability Management Service. • Oxfordshire Wheelchair Service. • Prosthetics Service. • Orthotics Service. • Specialist Disability Service. The Continuing Disability Management Service provides a service for adults with a wide range of disabling conditions including progressive conditions such as Multiple Sclerosis and Motor Neurone Disease. The service provides ongoing assessment review and support to the clients and their families and carers. The service works with the clients to increase their abilities, both physically and emotionally , and to adapt to changes in their condition. The service also provides outreach nursing or therapy to give support and advice in patients’ homes, nursing homes and acute hospitals. NOTES WHAT DOES THE SERVICE PROVIDE? The Continuing Disability Management Service is based on a detailed assessment—looking at all the different aspects of your care and needs, both at home and in the Centre. Your individual plan is based upon goals that are set with you and your family/carers. Ongoing assessment is at the centre of the service to ensure that changes in your personal needs and circumstances are identified and appropriate action taken. A team approach will be taken at all times and your goals are central to the process. THE TEAM ROLES Staff and volunteers within the Centre are identified by their name badges. Medical Doctors will be involved in the ongoing review and management of any medical problems relating to your disability. The majority of your everyday health needs and medication will be managed by your GP and/or other hospital doctors that you may be under the care of. Nursing You will have a primary nurse who, with your nursing team, will be responsible for your. The Primary nurse will also liaise with your District Nurse and the community teams if required. Occupational Therapy The Occupational Therapists aim to enable you to maintain/ adjust to your changing levels of independence in the aspects of daily living that are important to you. Assessment of daily living activities may include domestic and personal care tasks followed by provision of advice and liaison with relevant services. They will also assess any equipment needs that you might to maximise your safety and independence at home and in the community. They work closely with the wheelchair service to prevent difficulties arising from poor seating. Advice can also be provided to help manage your fatigue. Physiotherapy The Physiotherapists aim to help you to maintain your physical abilities and to minimise any complications. This is achieved by regular reviews, which identify any problems that require intervention. An individual plan to address these will then be developed by you and your physiotherapist. It may involve advice on posture, spasticity, provision of mobility aids, development of a home exercise programme or an individual gym programme. These may be shared with community physiotherapists if required. Clinical Psychology Clinical/Counselling Psychologists and other Psychological therapists apply psychology to a range of problems that can occur associated with your disability. They see people who may be depressed, anxious or worried about how they are coping, as well as those who are having difficulties with memory, concentration or problem solving. They are also available to provide support and counselling to assist you and your family members (adults and children). A Relationship and Psychosexual Therapist is also available to help you adjust to the impact your disability has had on your FURTHER INFORMATION • Individual leaflets are available with more detailed information about parts of the service described in this booklet. • Staff will be happy to answer any questions that you may have or refer you to someone who will be able to help you. Contact Details: The Continuing Disability Service Oxford Centre for Enablement Nuffield Orthopaedic Centre NHS Trust Windmill Road Headington OXFORD OX3 7LD Administrator Fax Transport Nurses Office Physiotherapy Occupational Therapy Speech and Language therapy Email [email protected] (01865) 737205 (01865) 227294 (01865) 737260 (01865) 737249 (01865) 737220 (01865) 737230 (01865) 737335 Speech and Language Therapy Sometimes this can take a little time to organise. If you would like to see your own notes, please speak to your consultant or one of the nurses on the ward. If you would like to see your Health Record after you leave hospital, or if you would like copies of your Health Record, you will need to send a written request, called a Subject Access Request, to the Health Records Team Leader for the Trust. Pease tell us clearly who you are, how you can be contacted, what it is that you wish to see and why you wish to see them. You may want to see your complete record, or only things related to recent care. There is a charge of £10 for Subject Access Requests. Further charges (up to a total of £50) are made for providing copies. When we receive your completed form and the fee, we aim to respond to the request within 40 days or 21 days if your records have been updated within the last 40 days. You have a right to ask for your information to be changed or blocked if the information we are holding about you is incorrect. If You Have Any Comments or Complaints Your comments are important to us and should be directed to the Rehabilitation Services Manager, the Medical Director or the Head of Nursing, in the first instance. If you feel your concern has not been fully addressed, please contact The Patient Advice and Liaison Service on 01865 227459. The Speech and Language therapist (SLT) and assistant provide assessment, advice and if appropriate, individual or group programmes for you if you have speech (articulation), language, cognitive-communication, voice or swallowing difficulties. If you require communication aids, they will refer you to the Specialist Augmentative and Alternative Communication SLT for assessment and advice and support regarding funding suitable equipment. They liaise with the Community Speech and Language Therapy Service if they are also involved. They will advise other staff on aspects of communication and safe swallowing. Social Services There is not a resident Social Worker for the service as most clients have a Care Manager in the community, but the team will liaise with The social and Health Care Services. Pastoral Care Chaplains are available to help you and your relatives in your personal and spiritual response to your situation. Chaplains and pastors of most faiths can be asked to visit you while you are in the Centre. Please ask a member of staff to arrange a visit for you if required. Links with Voluntary Agencies The centre has close links with voluntary agencies involved with people with conditions such as MS, Motor Neurone Disease and Stroke. Information is available on notice boards around the centre or do ask a member of staff for information on these organisations or others that may be specific to your condition. Research The Oxford Centre for Enablement is a centre for research into, and development of, rehabilitation services. Some patients may be asked to take part in a research project. If you are asked to participate, the purpose and what it will entail will be explained and your permission sought. All such projects are registered with, and approved by, the local Research Ethics committee. Whether or not you choose to take part will not have any influence in your personal care plan or treatment programme. If you do take part, you may be helping to benefit future patients. HOW LONG WILL I STAY? Your first contact with the service will normally be a home visit from one or more of the team, when you may have received this booklet. You may already have seen one of the doctors at the Centre as an outpatient. The aim of the home visit is to find out as much as possible about the problems that you may have with mobility, activities of daily living, communication etc. and to see how this affects you and your family in your everyday lives. Seeing someone at home provides the team with a much better picture of your needs than in an outpatient clinic. The next stage, if the team feels it is appropriate and you wish so, is for a comprehensive assessment to be completed by all team members. This is normally arranged as an inpatient stay on the ward for four nights but can also be carried out by attending a six week period as a day GIVING CONSENT Before you give consent for treatment, staff will clearly explain your treatment and any risks or side effects which you may experience. YOUR HEALTH RECORD Information about you, your medical treatment and family background, may be recorded wither on paper or computer, or both, as part of providing you with health care services. The information forms part of your Health Record and will be kept in case we need to see you again. HOW WE USE YOUR INFORMATION Staff at the Trust need to use information about you so that you will receive the best possible care and treatment. We may need to share information about you with other People involved in your care, such as your GP, dentist, health visitor, community nurse or social worker. We may also need to share some of this information, by law, or to prepare statistics for research and management. YOUR HEALTH RECORD You have the right to access your Health Record. If you are staying in the hospital, you can usually look at your Health Record folder. Your consultant will arrange for a Member of staff to be present to explain medical terms and answer your questions. WHAT ARE MY RIGHTS AND REPONSIBILITIES? The Oxford Centre for Enablement is committed to delivering the highest possible standard of rehabilitation and care. • Our staff will look after you with care and skill in keeping with recognised standards, practices and ethics. • You have a right to considerate, respectful care at all times and under all circumstances, with recognition of your personal dignity and your right to privacy. • Your care and treatment will be sensitive to your cultural and religious values and beliefs, sexual orientation and disability issues. • All the staff at the OCE are legally and ethically obliged to keep information on your health confidential. Only health staff who are authorised can have access to information about you. If any person outside the OCE requires information, such as other doctors, or social workers, we will ask your permission before releasing the information. • You are entitled to receive information about all services that may be beneficial to you and information about strategies to help you in the management of your condition. • • You will be involved in the development of your care plan. You will have the opportunity to discuss your continuing health care with staff before you are discharged. patient HAPPENS or occasionally as an outpatient. WHAT NEXT? When all your assessments are completed, the team will review all the findings and plan how your needs can best be met. This may include: Intermittent Admissions - to enable the team to monitor your needs and provide active therapy/nursing care as required. These admissions enable the service to identify any new problems that may have arisen and can be agreed in advance to enable your family or carers to take a break away from home if they wish to. The frequency of these is agreed on an individual basis and will be reviewed each year. Day Care / Hospital - The day service provides a weekly visit to the Centre during which you can take part in the activities in the day room, have the opportunity to meet and socialise with other people who may have similar problems to yours and/or receive therapy or any treatment you require. It also gives you an opportunity to raise any issues, in relation to your disability, which may be concerning you. Some clients will come for day care for a short period, others for much longer periods depending on their individual needs and goals. Any acute medical problems should always be discussed with your GP. Outpatient Therapy - a period of active treatment by one or more of the professionals in the team to meet specific goals. Referral to Another Team - in your local area, who can provide therapy in your own home, or as an outpatient, day care or other support if this is more appropriate than attending OCE. It may be that you and the team agree that no active intervention is required at this time. If this is the case, it does not mean that they will not be willing to see you again if your circumstances change. The service will accept a re referral at any time either from you or your family or from another person involved in your care. The amount of input individuals receive from nursing and therapy staff will be determined by your individual needs and you many not see a specialist on every visit. Please ensure that you do inform staff if you have any concerns or needs so that they can be addressed. Family members and friends frequently provide valuable support and encouragement. We will consult with you to ascertain how you would like us to communicate with and involve your friends and family and keep them informed of any issues. HOW CAN I MAKE THE MOST OF CONTACT WITH THE SERVICE? Being aware of the following points will help you and the team to make the best of the service offered. • Keeping appointments. If you are brought in by transport please be ready on time. • If you wish to cancel an appointment for day care, admission or outpatients, please telephone the Centre and give as much notice as possible especially if trans port is arranged for you. • If you repeatedly fail to attend your day care place without giving good reasons, the team will consider offering it to another client. • Practising some exercises in your own time and at home if your therapist suggests that you should do so. • Raising any concerns or problems that you may have with the relevant therapist or your primary nurse. • Taking as active a part as you feel able to or wish to, i n the day to day activities in the centre. ONGOING SUPPORT Clients of the service are often in touch with the team over a period of years and it is an important part of the role of the service to provide support to you and the family/friends involved in your care. There are lots of instances where simple advice or information is all that is required but sometimes there are more complex issues. The team here are experienced in a wide range of problems and concerns that can affect people with disabilities and the people who are closely involved with them, and will be very willing to listen. If there are steps that can be taken within the service by referral to an appropriate member of the team that will be arranged or it may be there is a source of help outside of the OCE that we can help you to access. Confidentiality is very important and the team would not discuss personal issues concerning you with anyone in your family without your permission. Similarly, they would not pass on any information to another member of the team against your wishes unless to not do so would compromise that person professionally.