The Patient Perspective Ms Ginette Camps-Walsh Working in partnership with

Ginette Camps-Walsh FEmISA2 Improving Interventional Radiology: The need for action

UFE- MY FIBROIDS! BEFORE Uterus 34 weeks - looked pregnant 4 large fibroids Enlarged kidney Heavy & prolonged menstrual bleeding AFTER UFE Uterus normal size - much slimmer Kidney normal size Bulk symptoms gone Overall improvement in health Feel younger! – playing squash Would have UFE again Recommended to many No early menopause

Ginette Camps-Walsh FEmISA4 BENEFITS OF EMBOLISATION Clinical Benefits Lower mortality than hysterectomy No surgery, no general anaesthetic, quicker recovery No possibility of surgical trauma No haemorrhage, no scars, small incision site Fewer long-term side effects c.f. hysterectomy - early menopause, prolonged early HRT use, sexual dysfunction, clinical depression, urinary incontinence, vaginal or posterior prolapse, later adhesions Uterus still intact, maintain fertility & sexual function Possible to have successful pregnancy

Ginette Camps-Walsh FEmISA5 BENEFITS OF EMBOLISATION Social Benefits Overnight hospital stay versus 5-10 days for hysterectomy Little at home nursing care required Return to work in 1-2 weeks versus 3 months for surgery No restriction to lifting or driving Reduced likelihood of early menopause Less likelihood of corrective surgery Maintain fertility & femininity – important to women Sexual function normally unaffected Possible to have successful pregnancy

BENEFITS OF EMBOLISATION Cost to Patients, their families 1 night hospital stay vs days hysterectomy Return to work 1-2 weeks vs. 3 months Little if any need for care from family No restriction on driving and lifting Less need for early HRT Cost to NHS 1 night stay vs days – freeing resources UFE less expensive than surgery Less early HRT etc Ginette Camps-Walsh FEmISA6

ECONOMIC BENEFITS ECONOMIC BENEFITS Potential Theoretical Savings if all Hysterectomies for Fibroids were replaced by UFE NHS Savings PbR Tariff £19,367,441 Saving Hospital Bed Days 77,355 Savings on working days * 1,137,570 Economic savings * £100,788, *Return to work 2 weeks UFE vs. 3 months hysterectomy Ginette Camps-Walsh FEmISA7

SERIOUS EQUITY ISSUES WITH UFE Access to UFE – Confined in the main to assertive, educated women from higher socioeconomic groups Women from lower socioeconomic groups could arguably benefit more from UFE Clinical Equity for women and men – Prostatectomy normally confined to cancer treatment Hysterectomy used inappropriately for many minor gynae problems Shouldn’t such invasive surgery should be confined to cancer treatment? Ginette Camps-Walsh FEmISA8

9 BARRIERS TO ACCESS FOR UFE The NHS Referral System! Many women are not informed of alternatives to hysterectomy [contrary to NICE & GMC guidelines & NHS white paper] There is a lack knowledge about UFE & centres offering it Comparative information on hysterectomy vs. UFE often inaccurate and biased Women are often not given a choice IRs and gynaecologists should be working together as a team – this is happening Hysterectomy is second commonest operation in the private sector

Ginette Camps-Walsh FEmISA10 BARRIERS TO ACCESS FOR UFE Knowledge and Education mustNICE guidelines on Heavy Menstrual Bleeding state - women must be offered UFE, hysterectomy and myomectomy – but many are not Most GPs are unaware of UFE - unable to advise women uninformed patients do not have a choiceWomen are not being informed about comparative morbidity & mortality of fibroid treatment objectively, if at all – uninformed patients do not have a choice Commissioners are unaware of UFE and do not commission it Commissioners may feel NICE clinical guidelines are expensive Some PCTs refuse to fund local UFE, although it is cheaper Huge health inequalities – the educated find out for themselves

Ginette Camps-Walsh FEmISA11 BARRIERS TO ACCESS FOR UFE NHS Procedural Issues Patients cannot be referred directly to interventional radiologists or use Choose and Book No proper OPCS codes for UFE so – –No proper PbR tariff PbR tariffs encourage old invasive treatments e.g. hysterectomy because they pay more NICE Technology Appraisals commissioning is mandatory, but clinical guidelines and interventional procedures reviews are not NICE does not consider costs to patients, their families, employers and society – Freddie Earl Howe would like this to change

Ginette Camps-Walsh FEmISA12 HOW TO IMPROVE ACCESS TO UFE Impetus from on High (DH/Ministers) to – 1.Ensure every Trust fully informs all patients objectively of all treatment options - audited through PROMS 2.Sort out proper OPCS codes for UFE and all IR procedures 3.Change PbR tariffs so less invasive new medical technologies are more profitable for Trusts 4.Allow direct access to IRs & through Choose & Book 5.Set up an education system for GPs and commissioners to ensure they are informed & aware of new medical technologies and IR procedures and commission them 6. Change NICE’s remit to include patient & societal costs and reform medical technology reviews 7. Ensure sufficient NHS resources to meet patient demand.