1. Influencing specialised commissioning Responding to the consultation on service specifications and clinical policies Alastair Kent OBE Director Genetic Alliance UK Genetic Alliance UK webinar Wednesday 19 th December 2012

2. Specialised commissioning from April 2013. Consultation on service specifications and clinical policies. Two example service specifications. The preimplantation genetic diagnosis policy. Tips for your response. Overview

3. Until March 2013From April 2013 Serving:Old nameCommissioned according to: Commissioned by: New nameCommissioned according to: Commissioned by: Populations of 2 million to 5 million Regionally commissioned services Specialised Services National Definition Set (SSNDS) Specialised Commissioning Groups (SCGs) representing regional groupings of Primary Care Trusts (PCTs) Specialised services The service specifications in this consultation. NHS Commissioning Board The whole of England Nationally commissioned services Recommendation of Advisory Group on National Specialised Services (AGNSS) National Specialised Commissioning Team (NSCT) Highly specialised services Previous specifications? To be reviewed? NHS Commissioning Board Specialised commissioning from April 2013

4. Many unknowns! End to postcode lotteries and regional variation? Commissioning once: national efficiencies? Levelling up, not a levelling down? Transition is occurring very quickly, too quickly? Always important to speak up.

5. Specialised commissioning from April 2013 Service specifications under consultation Developed by clinical reference groups (CRGs) with membership: Clinical chair. Commissioner. Patient and public engagement members. Clinicians. Public health clinician. 12 months to prepare these. Asked to be cost neutral as far as possible.

6. Consultation on service specifications and clinical policies Specialised services are broken down into five areas: Area A – Internal medicine (digestion, renal, hepatobiliary, and circulatory system) Area B – Cancer and blood (infection, cancer, immunity and haematology) Area C – Mental health Area D – Trauma (traumatic injury, orthopaedics, head and neck, and rehabilitation) Area E – Women and children (women and children, and congenital and inherited diseases) All of these areas contain some service specifications relevant to our members.

7. Consultation on service specifications and clinical policies What to look for when examining the service specifications. Two examples: Specification E1: Medical Genetics Specification E6b: Specialised services for Inherited Metabolic Disorders (paediatrics) (Both under Area E.)

8. Consultation on service specifications and clinical policies The link to the consultation is: www.commissioningboard.nhs.uk/ourwork/d-com/spec-serv/consult/ This is on the email inviting you to this webinar.

9. Specification E1: Medical Genetics 1.1 National/local context (Page 1-2)

10. Specification E6b: Metabolic disorders (paediatric) 1.1 National/local context (Page 2)

11. Specification E1: Medical Genetics Evidence base (Page 3)

12. Specification E6b: Metabolic disorders (paediatric) 2.1 Aims and objectives (Page 4)

13. Specification E1: Medical Genetics 2.2 Service description/care pathway (Page 8)

14. Specification E6b: Metabolic disorders (paediatric) 2.2 Service description/care pathway (Page 9)

15. Specification E1: Medical Genetics 2.3 Population covered (Page 14)

16. Specification E1: Medical Genetics 2.4 Any acceptance and exclusion criteria (Page 15)

17. Specification E6b: Metabolic disorders (paediatric) 2.5 Interdependencies with other services (Page 10)

18. Specification E6b: Metabolic disorders (paediatric) 3 Applicable Service Standards (Page 11)

19. Specification E1: Medical Genetics 4 Key Service Outcomes (Page 20)

20. Document E1 Clinical commissioning policy Pre-implantation Genetic Diagnosis (Under Area E) Until April 2013 PGD is commissioned locally. This policy brings PGD into the Medical Genetics specification, and into national specialised commissioning. All eligible patients may have 3 cycles of PGD on the NHS. Eligibility is not based on condition. Based on clinically proven criteria. We need to support this! New PGD Policy

21. Establish why your voice is important. Only cover the topics you want to. Tell them which topics they have missed. Give them evidence to back up your point. Be clear and concise. Lay out your document well. Make it as easy as possible for them to “get it”. Ask a “lay” person to read it. No need to use the form! Tips for your response

22. No need to use the online form! The online form only allows you to discuss a single service specification at a time. If you wish to discuss more than one, this is best done in a document, which you can send here: ssc.consultation@nhs.net It is important to include the following details: Your name. Your email address. The organisation you are representing (if applicable). The services specification(s) that you are referring to.

23. Friday 18 th January Deadline

24. Questions to: specialised2013@geneticalliance.org.uk These will be answered in our next webinar, which will be published on Tuesday the 8th of January. We would like to thank the following organisations for donations to facilitate these webinars: BioMarin Pfizer Shire Thank you for listening!