National Infertility Group Report January 2013

5. What did we find?

5.1 Overall activity in Scotland

58. The overall IVF activity in Scotland, the number of resulting births and the success rates for individual units can be accessed from the HFEA website¹⁶. The most up to date data on the HFEA website dates from 2010, and we have used these figures as they have been validated. These have been collated in Appendix D. Overall 4,332 cycles (this figure includes both fresh and frozen cycles) of treatment were given in 2010, of which 3,031 were given in the four NHS units. This resulted in 1,043 live births of which 735 were from NHS units.

59. Around 3.5% of all first births in Scotland are as a result of IVF treatment. One in seven of first births in women aged 35 to 39 is aided by assisted conception techniques.

60. At the current average working estimate of £3,600 per cycle of IVF/ICSI, the average cost per live birth is £12,325 for women below the age of 35, rising to £19,360 for women aged 38 to 39. In the few women treated over the age of 40 the cost per live birth is considerably more.

5.2 Trend over time: the reason for the increase in demand

61. The HFEA's report¹⁷ Fertility Treatment in 2010, shows there was a 6% rise in 2010 in the number of fertility treatments carried out in the UK, and that the average age of women undergoing IVF in 2010 was 35.1 years, up from 33.6 in 1991. This reflects the wider trend seen in Scotland and across the UK for women to have their children later. In Scotland, the average age of mothers has increased from 27.4 in 1991 to 29.6 in 2010.

62. The figure below illustrates the trend to increasing age of women giving birth in Scotland - drawn from Scotland's Population 2011 - The Registrar General's Annual Review of Demographic Trends¹⁸ According to this review, though the levels differed considerably, the age patterns of fertility for 1951, 1964 and 1977 were roughly the same. However, the age distributions for 1991 onwards show distinctly older peaks and that for 2011 reveals a further reduction in fertility of women in their twenties, mirrored by an increase for women in their thirties, compared with 1977 and 1991.

63. The trend towards later childbearing is underlined by changes in the average age of all women giving birth. This was 29.7 in 2011, compared to 27.4 in 1991, 26.1 in 1977, and 27.4 in 1964.

Figure 1. Scotland's Population 2011 - The Registrar General's Annual Review of Demographic Trends

64. Some variation in demand for IVF treatment has been seen across Scotland. Certain areas, including Fife, have seen an increase in demand for IVF, whilst referrals have reduced elsewhere. However, overall demand has increased due to couples deferring the decision to have children until later in their reproductive life.

5.3 Numbers being commissioned by Health Boards, criteria and waiting times

65. Not all NHS Boards offer patients access to funding for the same number of cycles, with NHS Borders, NHS Dumfries & Galloway, NHS Fife, NHS Forth Valley, NHS Greater Glasgow & Clyde, NHS Lanarkshire and NHS Lothian funding up to two cycles of treatment to patients. Eligible patients in NHS Ayrshire & Arran, NHS Grampian, NHS Highland, NHS Tayside and all three of the island Boards can access funding for up to three cycles of treatment. During the lifetime of this Group, several NHS Boards reduced provision from three to two cycles, however, the situation at the end of December 2012 is that around 20% of eligible patients in Scotland can potentially access three cycles of treatment, with the remaining 80% able to access two.

66. At present some NHS Boards take into account self-funded cycles and deduct these from the number of NHS-funded cycles. In addition, long waiting times often mean that although a patient is theoretically entitled to a number of cycles, in practice, time runs out for them and their actual entitlement is less. This was particularly the case in NHS Boards which have now officially reduced the number of available cycles. Furthermore, as this group of patients is older when treated their outcomes are adversely affected, which is why reducing waiting times across Scotland is so important.

67. In addition, there is wide variation in the per capita number of cycles commissioned by each Board. NHS Fife Health Board commissions 2.57 cycles per 1,000 women aged 30 to 39, whereas NHS Ayrshire and Arran commissions 5.85 - twice the rate.

68. Waiting times during 2012 varied from no wait in NHS Borders, to 3 years and 8 months in NHS Grampian. In addition, patients in NHS Fife, NHS Forth Valley and NHS Tayside are moved to the bottom of the waiting list after an unsuccessful treatment cycle.

69. As already noted, the Group's priority is equity; however, local Board investment is a crucial factor and it is clear that Board funding decisions and not capacity in the treatment centres, is generating this variation.

70. The tables that follow set out further details of IVF provision. Table 4 shows current provision by NHS Boards during December 2012, whilst Table 5 compares the picture at the end of 2012 with waiting times in December 2010. Table 6 sets out details of capacity in the provider units for the quarter ending September 2012.

Table 4. Situation in NHS Boards during December 2012 for first cycle of treatment

Boards are listed under their provider Board

NHS Board	Number of NHS-funded cycles per annum	Numbers waiting	Number of cycles	Waiting time (December 2012)	Eligible Population (women aged 30-39)	Cycles per 1,000 eligible women
Greater Glasgow & Clyde (Provider)	338	296	2	1 year, 11 months	80,161	4.22
Ayrshire & Arran	118	113	3	1 year, 10 months	20,171	5.85
Dumfries & Galloway	33	18	2	1 year	7,206	4.58
Lanarkshire	185	59	2	1 year	35,044	5.28
Grampian (Provider)	120	264	3	3 years, 8 months	33,300	3.60
Highland	70	80	3	1 year, 10 months	16,598	4.22
Orkney	12	0	3	3-6 months	1,109	10.82
Shetland	10	0	3	3-6 months	1,403	7.13
Lothian (Provider)	195	309	2	1 year	61,617	3.16
Borders	30	0	2	No wait	5,769	5.20
Tayside (Provider)	86	221	3	1 year, 6 months	22,100	3.89
Fife	55	129	2	1 year, 6 months	21,420	2.57
Forth Valley	83	183	2	1 year, 6 months	18,093	4.59
Western Isles	No limit set	0	3	3 months	1,456

All NHS Boards currently include the replacement of any frozen embryos resulting from a fresh treatment cycle, within one full cycle of IVF treatment.

Table 5. Comparison of waiting times

NHS Board	Waiting time December 2010	Waiting time December 2012
Ayrshire & Arran	1 year, 10 months	1 year, 10 months
Borders	No wait	No wait
Dumfries & Galloway	1 year	1 year
Fife	3 years, 3 months	1 year, 6 months
Forth Valley	3 years, 3 months	1 year, 6 months
Grampian	2 years	3 years, 8 months
Greater Glasgow & Clyde	2 years	1 year, 11 months
Highland	1 year, 6 months	1 year, 10 months
Lanarkshire	1 year	1 year
Lothian	2 years	1 year
Orkney	3-6 months	3-6 months
Shetland	3-6 months	3-6 months
Tayside	1 year, 3 months	1 year, 6 months
Western Isles	2-3 months	3 months

5.4 IVF in Scotland compared to the rest of the UK

71. Provision in England varies depending on where patients live and a June 2011 report¹⁹ by the Westminster All Party Parliamentary Group on Infertility found that 39% of PCTs offered one cycle of treatment, 26% offered two and 27% offered three cycles. From April 2013 responsibility for the commissioning of fertility services will be handed to local GP-led Clinical Commissioning Groups.

72. There remain considerable concerns amongst providers and patient groups that the reorganisation of commissioning arrangements in England will not address current inequalities in access to treatment across the country.

73. Waiting times in Northern Ireland exceed 12 months, and eligible couples receive one cycle of fresh IVF along with one frozen transfer (where available). All eligible couples with children can access treatment.

74. Eligible patients in Wales can access up to two cycles of IVF, and wait a maximum of 18 months for treatment.

75. A table at Appendix E, compares the amount of IVF being delivered regionally across the UK. Scotland is currently delivering more IVF treatment pro rata than other areas of the United Kingdom.

76. A recent study²⁰ shows that Government funded IVF provision in the UK is amongst the lowest in Europe.

5.5 The activity in each unit and the capacity

77. Table 6 shows the current level of activity in each of the provider units, along with the actual capacity - if funded and appropriately staffed.

78. Although Centres may have the capacity to increase activity there would need to be investment in equipment and, possibly, staff. Staffing in such a specialist area has been problematic in the past, particularly in relation to Embryology Laboratories. These issues will have an impact on the budget setting for each Centre. We would expect NHS Boards to utilise the risk target in their Local Delivery Plans (LDPs), in respect of the IVF HEAT target. Provider units will have to support commissioning Boards with this task.

Table 6. Capacity in provider units for quarter ending September 2012

Provider unit	Current cycles carried out	Actual capacity	Potential capacity
NHS Grampian	412	500	768
NHS Greater Glasgow & Clyde	874	874	874
NHS Lothian	480	530	600
NHS Tayside	465	650	900

79. Whilst a lack of funding has been the main reason for high waiting times in the past, there will be capacity issues in the short term as NHS Boards seek to drive down their waiting times to reach a waiting time of 12 months by 31 March 2015, in some instances effectively almost doubling demand against the centres current capacity. It will be important for the four NHS Centres to discuss and share available capacity.

5.6 Numbers/proportions self-funding and why people self-fund

80. From data available from the HFEA for 2010, 30% of IVF cycles (own eggs, fresh cycles) are provided in Scotland by private healthcare providers. This figure will include a fair proportion of patients who do not meet NHS eligibility criteria. This figure is almost certainly substantially higher in England.

81. Using data available from NHS centres for 2011/12 (see Table 3), 1368 cycles were NHS-funded with 703 cycles self-funded. Assuming the proportion of patients using private clinics has not changed since 2010 the percentages of all fresh IVF cycles carried out in Scotland by the different funding sources are approximately 46% NHS-funded, 24% self-funded at NHS centres and 30% self-funded at private clinics.

82. The high proportion of couples currently funding their own treatment is a cause for concern if a high proportion of them are doing so only to avoid long NHS waiting times. Group members, however, were of the opinion that more patients self-funded because they did not meet their NHS Board's criteria for access, though particularly in NHS Grampian excess waiting times have also contributed to this figure. Reducing the NHS waiting times without taking action to standardise eligibility criteria and provision across Scotland may lead to a very significant increase in demand for NHS treatment and thus increase waiting times again.

5.7 Cost of IVF

83. Figure 2, taken from the discrete events simulation modelling shows the current baseline cost of NHS IVF in Scotland.

Figure 2. Current baseline cost of NHS IVF in Scotland

84. A number of NHS Boards have, over the past few years, made significant changes to address long waiting times in their areas. This has included increased investment, changes to eligibility criteria and treatment pathways, including a reduction, in the number of cycles of IVF provided. As a result waiting times have reduced, sometimes dramatically, in these areas.

85. Some NHS Boards are not investing appropriate amounts in this service, and they will have to increase this in the future and continue to do so annually, to ensure that the service remains equitable across Scotland. Appendix F sets out the number of cycles per 1,000 eligible women each Board currently commissions.

86. Based on figures provided by the four tertiary centres, the average tariff or working estimate for a cycle of IVF/ICSI treatment is £3,600. Modelling work has been developed to determine what level of funding would be required, first, to reduce waiting times to 12 months and, secondly to keep the service in a steady state.