Fran Ashworth Senior Immunology and Allergy nurse Specialist

1. Fran Ashworth Senior Immunology and Allergy nurse Specialist RGN, ONC. Clinical Immunology and Allergy Unit, Sheffield Teaching Hospitals NHS Foundation Trust

2. JS A patient perspective two years on! • Qualifications • RGN ONC Dip. Counselling • BA (Hons.) Health care Practice • Post Graduate Certificate Allergy • MSc in Advancing Health Care and Social • Practice Clinical Immunology and Allergy Unit, Sheffield Teaching Hospitals NHS Foundation Trust

3. JS A patient perspective two years on! • Quick recap on previous situation • Issues can be identified in the home that cannot be recognised over the phone or in clinic • All aspects of training assessed in the home environment Clinical Immunology and Allergy Unit, Sheffield Teaching Hospitals NHS Foundation Trust

4. JS A patient perspective two years on! • Disadvantages • Needs protected nursing time to do home visits • Geographical issues, travel time, Lone worker issues • Mountains to climb since 2010 Clinical Immunology and Allergy Unit, Sheffield Teaching Hospitals NHS Foundation Trust

5. JS A patient perspective two years on! • Home visit identified: • Major stress to family relationships • Altered roles, mother / son became patient carer, this had a major impact on the whole family • Relationships were at breaking point Clinical Immunology and Allergy Unit, Sheffield Teaching Hospitals NHS Foundation Trust

6. JS A patient perspective two years on! • “One in four patients currently treated in hospital would be better off at home”. Mike Farrar, Chief Executive of NHS Confederation in an interview with the Financial Times. (December 2011) Clinical Immunology and Allergy Unit, Sheffield Teaching Hospitals NHS Foundation Trust

7. JS A patient perspective two years on! • Home visits allow us to see into the patients world • It enhances “Quality “ care, integrating the hospital & community care • It ensures seamless, individualised care. Clinical Immunology and Allergy Unit, Sheffield Teaching Hospitals NHS Foundation Trust

8. JS A patient perspective two years on! • Commissioners are also looking for: • Quality care • Patient safety • Improved patient experience • Home therapy provides Clinical Immunology and Allergy Unit, Sheffield Teaching Hospitals NHS Foundation Trust

9. JS A patient perspective two years on! • Quality of life is substantially improved by living as normal a life as possible, this includes: reduction of bacterial infections increased energy levels Carrying out normal every day activities including employment, socialising Clinical Immunology and Allergy Unit, Sheffield Teaching Hospitals NHS Foundation Trust

10. JS A patient perspective two years on! • Plan • Swap to hospital infusions • Move to Subcutaneous infusions instead of IVIg • Give control of condition to JS • Attended the unit twice weekly for infusions Clinical Immunology and Allergy Unit, Sheffield Teaching Hospitals NHS Foundation Trust

11. JS A patient perspective two years on! • During this time, jobs were applied for but when informed of condition, application was denied • Became “down in the dumps” (low mood) • Financially life was difficult, and socialising was almost non-existent Clinical Immunology and Allergy Unit, Sheffield Teaching Hospitals NHS Foundation Trust

12. JS A patient perspective two years on! • This had a significant detrimental affect on the Quality of life of JS • Further discussion and reassessing the situation • Start home therapy training via subcutaneous route as per competency based training Clinical Immunology and Allergy Unit, Sheffield Teaching Hospitals NHS Foundation Trust

13. JS A patient perspective two years on! • Attended the unit twice weekly due to the dose and volume of infusion • On completion of training was ready to go out on home treatment • Became comfortable attending the unit therefore delayed going out home Clinical Immunology and Allergy Unit, Sheffield Teaching Hospitals NHS Foundation Trust

14. JS A patient perspective two years on! • Continued to look for employment with little success • Became increasingly pessimistic about the future Clinical Immunology and Allergy Unit, Sheffield Teaching Hospitals NHS Foundation Trust

15. JS A patient perspective two years on! • Rollercoaster journey since 2010 • Breakthrough • Applied for a post and was successful, did not disclose condition Clinical Immunology and Allergy Unit, Sheffield Teaching Hospitals NHS Foundation Trust

16. JS A patient perspective two years on! • Care closer to home • Shared decision making was the driver • to get out on home therapy • All arrangements to transfer to home therapy completed Clinical Immunology and Allergy Unit, Sheffield Teaching Hospitals NHS Foundation Trust

17. JS A patient perspective two years on! • “Helping people with chronic and long term conditions has benefits for everyone” • DOH. The national Service Framework for long term conditions. DH (2005) London • Health & Social Care Act (2012) Department of Health London Clinical Immunology and Allergy Unit, Sheffield Teaching Hospitals NHS Foundation Trust

18. JS A patient perspective two years on! • Outcome • Self-infusing at home with minimal input from mother • Relationships improved and family life is now back to “normal” • Is in full time employment and social life has improved Clinical Immunology and Allergy Unit, Sheffield Teaching Hospitals NHS Foundation Trust

19. JS A patient perspective two years on! • Other concepts of care to achieve the outcome of this case study • Holistic approach is vital to incorporate • Patient centred care Clinical Immunology and Allergy Unit, Sheffield Teaching Hospitals NHS Foundation Trust

20. JS A patient perspective two years on! • DOH.(2006) Self care for people with long term conditions London • DOH. (2001) The expert patient: new approach to chronic disease management for the 21st century London Clinical Immunology and Allergy Unit, Sheffield Teaching Hospitals NHS Foundation Trust

21. JS A patient perspective two years on! • Thank you, any questions? Clinical Immunology and Allergy Unit, Sheffield Teaching Hospitals NHS Foundation Trust

22. JS A patient perspective two years on! There is no price on Quality of Life Clinical Immunology and Allergy Unit, Sheffield Teaching Hospitals NHS Foundation Trust

23. JS A patient perspective two years on! Clinical Immunology and Allergy Unit, Sheffield Teaching Hospitals NHS Foundation Trust