Home therapy programme A guide for GPs Information for GPs Clinical Immunology and Allergy Unit
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Introduction This booklet is to give GPs an outline of the immunoglobulin replacement home therapy programme and the role of the general practitioner in this programme. When to use this protocol To be given/sent to the GP prior to a patient commencing home therapy training. How to use this protocol GP's should read this information prior to their patients starting home therapy with intravenous or subcutaneous (normal) immunoglobulin. This will aid effective communication between the GP and the Clinical Immunology and Allergy Unit (CIAU) staff to optimise the care of the patient. The Home Care Co-ordinator currently works Tuesday to Thursday inclusive and will visit GP's if they require further information about home therapy Risk management To reduce the risk of complications and help patients maintain independence in giving their own treatment safely. Aims To outline the home therapy programme and the role of the GP in this programme. Objectives To ensure GP's are aware that their patient(s) has been prescribed immunoglobulin To inform the GP about the process of home therapy and the training involved for his/her patient To enable the GP to highlight any potential problems or concerns regarding the patient s or infusion partner s suitability To inform the GP about potential adverse reactions and information given to the patient on the action to take with: Mild Moderate Severe reactions To provide the GP with contact details for further support and advice as required A copy of the training programme can be sent to the GP if requested. page 3 of 8
National Guidelines for Home Immunoglobulin Treatment It is a requirement that patients receive formal competency based training at a recognised centre before infusing intravenous immunoglobulin (IVIG) or subcutaneous immunoglobulin (SCIG) at home. Guidelines for Home Immunoglobulin therapy have been approved by the professional medical and nursing bodies and by the Department of Health (http://www.ukpin.org/home/standards Domain E Home Therapy Standards). Sheffield Teaching Hospitals NHS Foundation Trust offers an approved IVIG and SCIG Home Therapy Programme for patients and infusion partners. The low incidence of adverse reactions with current IVIG and Subcutaneous preparations and the ability to take measures to prevent such reactions has enabled self infusion at home to be undertaken and patient's taught how to recognise and deal with adverse reactions in the unlikely event they occur." The Clinical Immunology Unit is UKPIN (United Kingdom Primary Immunodeficiency Network) accredited for the care of patients with antibody deficiency and home therapy training. Selection of suitable patients for intravenous/subcutaneous infusions at home Patients must have expressed a wish to infuse at home, and have suitable venous access for intravenous therapy. All patients and infusion partners must be committed and motivated to learn. Patients must have a minimum of 3 months of hospital infusions of the same preparation of IVIG / SCIG without adverse effect, and demonstrate competence in its administration and in the recognition and management of adverse effects. The GP should agree to the self administration of immunoglobulins at home in his/her practice area. Availability of a telephone service while infusing is vital. There must be an agreed infusion partner (relative or friend) trained to carry out venepuncture or insertion of the needles (High flow needle set used for subcutaneous infusion) at home for intravenous infusions but not always for subcutaneous infusions. Training Training is co-ordinated by the Immunology Nurse Specialist / Home Care Co-ordinator in partnership with the primary health care team and local hospital (if applicable). Training is structured to meet individual patient needs and with the aid of the competency based home therapy training programme. Community nurses are welcome to attend. Initially, patients and infusion partners are encouraged to participate in preparing and monitoring the infusions and venepuncture under the guidance of a named doctor / nurse in hospital. Patients and infusion partners attend for their regular infusion at the Northern General Hospital (Sheffield Teaching Hospitals NHS Foundation Trust) and are instructed in all aspects of storage, preparation and maintenance of the immunoglobulin infusion and aseptic technique. Venepuncture page 4 of 8
(if applicable) and adverse reactions are covered in some detail as per the CIAU competency based training programme. Following this, further infusions should be carried out in hospital with minimum supervision. The Home Care Co-ordinator will make a further assessment before the first infusion is carried out at home and ensure adequate competency has been achieved. A test paper must be completed with 100% pass rate before the next stage of the home therapy programme continues. No one is allowed to infuse at home until both they and their infusion partner are judged competent and safe. All patients are advised to have antihistamines and paracetamol at hand during the infusion. Adrenaline is not supplied to every patient on home therapy; a risk assessment is undertaken on an individual basis. If required, it is supplied in the form of an adrenaline autoinjector. Current MHRA guidance is that two adrenaline autoinjectors should be provided in these circumstances. Equipment and prescribing The following equipment is provided free of charge to all patients. There is no cost to the GP. Drip stand Sharp bins Infusion sets Tourniquet Blue butterfly needles Gauze Tape Sterile sheet Alcohol surface and skin wipes Vacutainer system blood sampling bottles Any special equipment needs e.g. dressing packs are provided free but only on an individual basis. Ancillary equipment Infusion pumps are not required for intravenous therapy but are supplied for patients on subcutaneous therapy. These items are delivered by a home care company who also collect any clinic waste, including sharps bins. page 5 of 8
Roles and responsiblities The role of the General Practitioner Agreement from the GP is always sought and is vital to successful home therapy. Clinical supervision is shared with the Northern General Hospital, Sheffield, the Consultant Immunologist and General Practitioner as per NHS Executive guidelines (Department of Health, EL (91) 127). The ultimate responsibility for the patient remains with the Consultant Immunologist. A Special Information form for GPs on call is available for out of hour s emergencies. Aspects of care for which the GP is responsible Monitoring the general health of the patient at routine practice appointments and alerting hospital if cause for concern Responding quickly (within 24 hours if possible) to the need to prescribe a minimum of 10 days high dose antibiotics (e.g. amoxicillin 500mg tds) for infections. In most circumstances Sheffield formulary antibiotics should be effective as first line treatment. Many patients will already have a reserve course of antibiotics at home to be used when they develop infection. GPs should highlight on patient records that the patient is receiving immunoglobulins (immunoglobulins are hospital generated prescriptions) Ensure that immunoglobulin is entered onto GP computer system in such a way as to alert interactions and monitoring requirements, whilst minimising risk of an FP10 prescription being issued by the GP surgery. GPs are advised to follow recommendations for Recording specialist issued Drugs on Clinical Practice Systems see (http://www.intranet.sheffieldccg.nhs.uk/downloads/medicines%20management/practice%2 0resources%20and%20PGDs/Recording_SIDs_on_practice_clinical_systems.pdf) Patients with antibody deficiency should not be given live vaccines GPs may be requested to take 3 monthly blood samples for CRP, LFTs and trough immunoglobulin levels immediately prior to a patient s infusion. It is the responsibility of the patient to make arrangements for this with their GP if required. Results are monitored by the hospital team. Prescribing subsequent adrenaline auto-injectors if necessary The role of the Immunology Nurse Specialist There is a dedicated Home Therapy Co-ordinator at the Clinical Immunology and Allergy Unit, Northern General Hospital for the training of patients, infusion partners and health care professionals and the long-term management of the Home Therapy Programme. She/he liaises between other members of the health care team and acts as a resource for specialist advice and information regarding Immunoglobulin infusions and complications of immunodeficiency. She / He provide information and support to patients and partners. The Home Therapy Co-ordinator may visit local hospitals (if appropriate) or patients homes for training and monitoring purposes if necessary. Patients should submit their infusion logs which will be monitored at least three monthly to ensure early action if problems arise. page 6 of 8
The role of the Clinical Immunologist Regular follow-up by the Clinical Immunologist is essential and in patients with specific complications, shared care with appropriate organ-based specialists is necessary. In order to provide optimum service, it is important that patients on home therapy continue to be monitored by the Clinical Immunologist at six monthly intervals or at the discretion of the medical team. If patients fail to comply with the home therapy programme their home therapy will be withdrawn. Support and follow-up Telephone advice from the Clinical Immunologist or Immunology Nurse Specialist is available at all times during working hours. Out of hours advice for GPs and patients is available via the Northern General Hospital switchboard in an emergency (see contact numbers). In case of a GP being called to see a patient with antibody deficiency there is an alert letter to inform the on-call GP regarding the patient s condition Blood results are monitored regularly and annual assessments of patients are undertaken by medical and nursing staff. Patients responsibility Patients must attend a follow up appointment at the clinic for continuous monitoring. Regular bloods are required from patients to enable the immunology team to monitor their condition; failure to do so may result in prescriptions being withheld. Patient support groups There are two new patient support groups: PID UK 0800 987 8986 Email: hello@piduk.org Website: http://www.piduk.org UKPIPS 07531 076 409 Email: ukpips3@gmail.com Web: http://www.ukpips.org.uk page 7 of 8
Contact details Sister Fran Ashworth, Home Care Co-ordinator & Immunology and Allergy Nurse Specialist 0114 243 4343 (8.30am - 4.30pm) Bleep 2918 at the Northern General Hospital only Consultant Immunologists can be contacted during normal working hours via their secretaries at Sheffield Teaching Hospitals. There is no official out of hours contact. Consultant Immunologists Dr William Egner Dr Ravi Sargur Dr Anna Shrimpton Dr. Dilani Arnold Clinical Nurse Specialists Sister Fran Ashworth, Immunology & Allergy Nurse Specialist / Home Therapy Co-ordinator Sister Deborah Hughes, Unit Manager Alternative formats can be available on request. Email: alternativeformats@sth.nhs.uk Sheffield Teaching Hospitals NHS Foundation Trust 2016 Re-use of all or any part of this document is governed by copyright and the Re-use of Public Sector Information Regulations 2005 SI 2005 No.1515. Information on re-use can be obtained from the Information Governance Department, Sheffield Teaching Hospitals. Email infogov@sth.nhs.uk PD8945-PIL3813 v1 Issue Date: October 2016. Review Date: October 2018