The Information Standard

Source of information

We use information from external sources within some of our marketing materials, e.g leaflets, posters and booklets, to help provide as much accurate information as possible to the people we support.

Sometimes this information is derived from our own personal experience and opinion, completed patient questionnaires or fact-/theory-based evidence.

If we use any of the above to help us produce any of our information products, for example, if we use information on outcomes of having a specific treatment, side effects and risks or benefits, as a general rule, you will see a line referring you to this page for information on the source of this information.

Below is a list of the information products we have in circulation to date, which contain information derived from other sources.

Pressure ulcers leaflet

Information leaflet about how you can help with the prevention of pressure ulcers whilst you are in our care. Information has been derived from the following sources to help with the production of this leaflet:

  • National Institute of Clinical Excellence (NICE) (2014) Pressure ulcers – prevention and management of pressure ulcers
  • Prevention  and Treatment of pressure Ulcers (2014)  National Pressure Ulcer Advisory Panel, European Pressure Ulcer Advisory Panel and Pan Pacific Pressure Injury Alliance
  • The Royal National Orthopaedic Hospital NHS Trust (2011) Diagrams by kind permission

Zoledronic acid leaflet (St Johns Hospice)

Information leaflet on having Zoledronic acid at the hospice as a day patient within our day treatment unit. Information has been derived from the following sources to help with the production of this leaflet:

  • Clinical experience of working within hospice e.g. 4-6 weeks is based on what local oncologists usually ask for.

Paracentesis leaflet (Leckhampton Court Hospice)

Information leaflet on having Paracentesis at Leckhampton Court Day Hospice. Information has been derived from the following sources to help with the production of this leaflet:

  • De Gottardi A, Thévenot T, Spahr L, Morard I, Bresson-Hadni S, Torres F, et al. (2009) Risk of complications after abdominal paracentesis in cirrhotic patients: a prospective study
  • Clin Gastroenterol & Hepatol (2009)  Few complications after paracentesis in patients with cirrhosis and refractory ascites 2009;7:906-
  • Patient experience and questionnaire - when developing the service we asked patients to complete a questionnaire about symptoms and changes experienced
  • Recent article - we are also currently submitting an article to the Journal of Palliative Medicine where we have interviewed patients about their experience of malignant ascites and its management.

Having a Pamidronate infusion at our day therapy unit (Wheatfields Hospice)

This is a information leaflet for patients and carers about our service delivered in Leeds. Pamidronate belongs to a group of drugs called bisphosphonates. It is used to protect your bones against some of the effects of secondary bone cancer, such as pain and bone weakness.Information has been derived from the following sources to help with the production of this leaflet:
  • Palliative Care Formulary, 4th Edition
  • NHS Choices/ evidence - Disodium Pamidronate, checked October 2013
  • our clinical experience and expertise through delivering specialist palliative care 

Hypnotherapy (Manorlands Hospice)

This is a information leaflet for patients and carers about our service delivered in West Yorkshire. Hypnotherapy is a gentle and natural way to help with many physical, emotional and psychological concerns. It works safely and in harmony with any medical treatments that a patient may be receiving. 

Information has been derived from the following sources to help with the production of this leaflet:

  • Handbook of Hypnotic Suggestion and Metaphor by Dr Croydon Hammond
  • NHS Choices/ evidence 
  • our clinical experience and expertise through delivering specialist palliative care

For more information about the Information Standard and our compliance please see Information Standard quality mark.

Hand Hygiene leaflet

This is an information leaflet for visitors to our hospices and care centres about hand washing and processes set out by the Infection Control nurse. Information has been derived from the following sources to help with
the production of this leaflet:
  • the EPIC3: National Evidence Guidelines for Preventing Healthcare-Associated Infections in NHS Hospitals in England (2014)

Intravenous bisphosphonates

Information leaflet about intravenous bisphosphonates outlining how they are administered and the potential side effects. Information has been derived from the following sources to help with the production of this leaflet:
 
  • SPC (UK) Medac Disodium Pamidronate 3 mg/ml, sterile concentrate National version: 02.06.2012.
  • Palliative Care Formulary, 4th Edition, palliativedrugs.com
  • Renal Failure with the Use of Zoledronic Acid. N Engl J Med; 349:1676-1679 Chang JT et al (2003)
  • Narrative review: bisphosphonates and osteonecrosis of the jaws. Annals of internal medicine. 144:753-761 Woo SB et al (2006)
  • Management of the adverse effects associated with intravenous bisphosphonates. Annals of Oncology 17 (6): 897-907 T. Tanvetyanon & P. J. Stiff (2006).
  • Bisphosphonates and Ocular Inflammation. N Engl J Med; 348:1187-1188 Fraunfelder FW & Fraunfelder FT (2003)
  • SPC (UK) Zometa 4mg/5mL Concentrate for Solution for Infusion. Updated 07.10.2014 Novartis Pharmaceuticals UK Ltd
  • Bisphosphonates and Denosumab. Guidelines. Hospice in the Weald. Review June 2013. Ruth Newton and Helen McGee.
  • Bisphosphonate-induced Severe Hypocalcaemia - A Case Report, J Bone Metabolism 19(2):139-145. Won-Seok Do et al. 2012
  • Pamidronate, Zoledronic Acid and Ibandronic Acid Macmillan Patient Information and Support leaflets (31 Aug 2014), www.macmillan.org.uk
  • Text for patient reminder card as approved by the CHMP on 26 March 2015; https://www.gov.uk/drug-safety-update/denosumab-xgeva-prolia-intravenous-bisphosphonates-osteonecrosis-of-the-jaw-further-measures-to-minimise-risk

Understanding grief and finding support (Berkshire West and Nettlebed Hospice)

This is an information leaflet for recently bereaved families and carers within the Berkshire West area. It aims to improve understanding of the process of grief and provide sign posting to useful organisations who can provide additonal support.  

Information has been derived from the following sources to help with the production of this leaflet:

  • KEEGAN, O. (2002). Standards for Bereavement Care
  • NATIONAL INSTITUTE FOR CLINICAL EXCELLENCE (NICE) (2004). Guidance on Cancer Services. Improving Supportive and Palliative Care for Adults with Cancer.
  • REEF M, MACHIN L, ARCHER N, (Feb 2008) Guidance for Bereavement Needs Assessment in Palliative Care.
  • MACHIN L. (2007) The Adult Attitude to Grief Scale as a Tool of Practice for Counselors Working with Bereaved People.
  • Bereavement Services Association and Cruse Bereavement Care (2013) Bereavement Care Service Standards

Falls prevention leaflet

Information leaflet about how we try to prevent falls within Sue Ryder services, and how you and your visitors can help us prevent falls whilst you are in our care. Information has been derived from the following sources to help with the production of this leaflet:

  • National Institute of Clinical Excellence (NICE), Falls in older people: assessing risk and prevention (2013)
  • National Patient Safety Agency (NPSA), Slips, Trips and Falls in Hospital (2007)
  • Patient Safety First, The how to guide for reducing harm from falls (2009)
  • Care Inspectorate and NHS Scotland, Managing Falls and Fractures in Care Homes for Older People – good practice resource (2011). 
  • Sue Ryder Falls Risk Management Policy (2015)
  • Sue Ryder Falls Risk Management Strategy

Lymphoedema Clinic (St John's Hospice)

  • British Lymphology Society. (2013). population Needs Assessment and Professional Roles in the care of Lymphoedema

References

The information included on our website and in some of our printed publications is derived from our experience of providing care and may also draw on a number of expert references, listed below:


Cancer Research UK

British Lung Foundation

Carers' Centre

Carers' Resource

  • Providing support for carers across Bradford and Airedale, Harrogate and Ripon and Craven districts of Yorkshire

Carers' Trust

Carers' UK

Citizens Advice Bureau

Cruse Bereavement Care

Department for Work and Pensions

Dying Matters

Equality and Human Rights Commission

Health talk

Hospice.net

Money Advice Service

NHS Choices

NHS Sussex

Royal College of Psychiatrists

Scottish Government

Turn2us

UK Charities

UK Government