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Yes, we intend to maintain the commitment to sustain the zero level of patients inappropriately delayed in hospital for longer than the agreed 6 weeks discharge planning period while also tackling the level and length of delays under 6 weeks.

Health and social care staff should systematically use risk prediction tools to identify people who are frail and at greatest risk of emergency admission to hospital. Current good practice is that those at highest risk should have an anticipatory care plan completed which would incorporate a personalised plan and a structure for discharge planning. This should be a summary or shared record of preferred actions, interventions and responses that care providers should make following a clinical deterioration or crisis in an individual’s care or support.

The EU Council Recommendation on An Action in the field of Rare Diseases was published on 8 June 2009, and contains a number of recommendations for EU member states to take forward between now and 2013, including “plans and strategies in the field of rare diseases”. Officials from all four UK Health Departments are working together to prepare a national (UK) plan for rare diseases. A UK report back to the EU is anticipated by 2013.

Patients are recorded as delayed discharges from the moment they are clinically ready for discharge. Six weeks is the agreed maximum period for that discharge to then take place. We are in discussion with NHS and local authority partnerships about making sure that this maximum period is only used for exceptional cases and that in all other cases discharge should take place as soon as it is safe and appropriate, preferably in days not weeks and ideally to the setting from where they were admitted.

I have asked an expert group to report to me on how we can make this happen, to produce a better outcome for the individuals concerned.

This is a matter for individual NHS boards.

I wrote to the Chairs of NHS boards on 10 February 2011 asking that Medical Directors review any future cases where a patient has been deemed medically fit for discharge and subsequently dies before that discharge can take place.

Information on patients delayed for any duration is collected and published by Information Services Division every quarter. The census can be found at: http://www.isdscotland.org/Health-Topics/Health-and-Social-Community-Care/Publications/index.asp#563

The median length of delay at the April census was 21 days. This compares with 31 days in April 2007 and 87 days when the numbers peaked in October 2001. We are working with NHS and local authority partnerships to reduce these, not least through the introduction of the £70m Change Fund.

Information on all delays, including the median length of delay, is and has always been, published by Information Services Division every quarter. Census information is available at: http://www.isdscotland.org/Health-Topics/Health-and-Social-Community-Care/Publications/index.asp#563

Accumulated bed days lost to delayed discharge is one of the key measures within the reshaping care of older people change plan core improvement measures.

Social Care and Social Work Improvement Scotland (SCSWIS) assess the quality of care in care homes against the National Care Standards. Any other criteria it may use is an operational matter for SCSWIS.

For information you can contact the Interim Chief Executive of SCSWIS at:

Mrs Jacquie Roberts OBE

Social Care and Social Work Improvement Scotland

Compass House

11 Riverside Drive

DUNDEE

DD1 4NY

T: 01382 207100

E: jacquie.roberts@scswis.com

NHS Boards are expected to manage costs of treatment for particular conditions from their annual funding allocation. Blood transfusions recommended for a patient with paroxysmal nocturnal haemoglobinuria will normally be overseen by the patient’s local consultant.

The SMC does not recommend use of Eculizumab within NHS Scotland. Only medicines recommended by the Scottish Medicines Consortium (SMC) should be eligible for inclusion in the financial risk share scheme agreed by NHS Board Chief Executives. Decisions regarding whether to fund “not recommended” drugs on a case by case basis for individual patients through the Individual Patient Treatment Request (IPTR) arrangements are a matter for each NHS Board.

Scottish Ministers expect NHS Boards and clinicians to take full account of recommendations from the Scottish Medicines Consortium (SMC) and Healthcare Improvement Scotland (HIS) in the planning and provision of NHS services.

The SMC issued advice in November 2010 to confirm that eculizumab for the treatment for paroxysmal nocturnal haemoglobinuria (PNH) is not recommended for use within NHSScotland. Where the SMC has not recommended a medicine, NHS Boards are not expected to make it routinely available.

However, NHS Boards have arrangements in place for clinically led consideration of SMC "not recommended" medicines for individual patients in certain circumstances. The Scottish Government published Good Practice Guidance for NHS Board management of Individual Patient Treatment Requests (IPTRs) on 18 March 2011. The guidance can be found at:

http://www.sehd.scot.nhs.uk/cmo/CMO(2011)03.pdf.

The Scottish Medicines Consortium (SMC) operates independently from the Scottish Government. Details about the nature of SMC processes and further information about SMC decisions are available from their website: http://www.scottishmedicines.org.uk

The Scottish Medicines Consortium (SMC) assessed eculizumab for the management of Paroxysmal Nocturnal Haemoglobinuria (PNH) and advised NHS Scotland in November 2010 that it was not recommended for use within NHSScotland.

The Scottish Government is aware that the SMC has been in discussion with the company that manufactured eculizumab (Alexion) throughout the assessment process regarding SMC requirements and procedures and remain willing to continue these discussions. The SMC has indicated that they would welcome a re-submission for this medicine from the manufacturer at any time.