Postcode prescribing

A 7 page update of the Postcode Prescribing report was produced in 2003 - and may be downloaded as a pdf from the link below: 2003 Update: Postcode Prescribing Still Persists (113kb)

1. Background

The first drug for Alzheimer’s disease was licensed in the UK in 1997. There are now three licensed treatments: donepezil (Aricept), rivastigmine (Exelon) and galantamine (Reminyl). All three can help to improve or stabilise the symptoms of Alzheimer’s disease in many, but not all, people with the illness who try them. Alzheimer’s disease is a progressive illness, affecting memory, understanding and behaviour. People with Alzheimer’s disease gradually lose their ability to carry out the activities of daily living, such as shopping, handling money, personal care and cooking. Eventually, over several years, even basic activities such as dressing and going to the toilet become impossible without help. It is therefore vital that people are diagnosed and treated as early as possible, so that they can retain maximum independence. A delay of even a few months means the person with Alzheimer’s disease loses skills he or she may never regain. Family members’ lives change too as they cope with the changes in the person they love, and devote increasing time and effort to caring tasks, often having to give up work and seeing their own social lives dwindle. From the moment the first drug was licensed, many people with Alzheimer’s disease and their families have faced difficulty in accessing the new treatments. Many health boards hung back in 1997, awaiting better evidence of efficacy. As the evidence became available, some still failed to fund treatment, leaving patients facing a ‘postcode lottery’: in some areas treatment was available, in some it was limited and in some it was impossible to get unless people could afford to pay. In January 2001, the National Institute for Clinical Excellence (NICE) in England and Wales issued guidance setting out data on efficacy and cost effectiveness of Alzheimer’s disease drugs and recommending that treatment be funded by the NHS, according to a clear protocol set out in the report involving specialist hospital-based doctors in diagnosis and assessment of patients. In April 2001, the Health Technology Board for Scotland (HTBS) issued its own recommendations, following the NICE guidance but amending treatment protocols to suit Scotland, where not all patients have access to specialists. Every year since 1997, Alzheimer Scotland has renewed its campaign against postcode prescribing. In summer 2001, we carried out a comprehensive survey of health boards to find out how the availability of treatment for Alzheimer’s disease had changed, six months on from the NICE report and three months after the HTBS recommendations.

2. The survey

In July 2001, we wrote to the Chief Executive of all health boards in Scotland, asking: 1. Has the Board implemented the NICE/HTBS recommendations, and if not, what is the timetable for implementation? 2. How much has the Board allocated for drug treatment for Alzheimer's disease in its budget for 2001/02, and how is this amount broken down between costs of diagnosis and assessment and of prescribing? 3. How many patients with Alzheimer’s disease are currently receiving one of the three cholinesterase inhibitors (donepezil, rivastigmine and galantamine), and how many will be treated this year? 4. Is there a waiting list for these treatments, and if so, how many patients are on it and how long will they have to wait for treatment? 5. Does the Board’s policy restrict which of the three drugs may be prescribed and at what dosage? 6. What is the Board’s policy on treatment of people with learning disability and Alzheimer’s disease, who, due to the nature of their disability, cannot be assessed by the standard tests such as the Mini Mental State Examination(MMSE)?

3. Results

14 of the 15 health boards replied to the survey. 3.1 NICE/HTBS recommendations 8 boards state that they have implemented the NICE/HTBS recommendations, or that they support them or their own policy is broadly consistent with them (see footnote 1). Three are in the process of implementing them (see footnote 2). 3.2 Budgets 4 boards have budgets for prescription alone, ranging from £123,000 (Ayrshire and Arran) to £25,000 (Grampian). 4 have no separated budget but gave figures for prescription and a further 4 were not able to quantify their spending. Lothian’s budget of £70,000 includes diagnosis and assessment costs in its memory treatment clinic. 3.3 Numbers receiving treatment 11 boards gave the number of patients currently being treated and one (Glasgow) gave an estimate for the year. For two boards (Grampian and Highland) we extrapolated from the budget figures given. Numbers ranged from 2 (Orkney) to 650 (Lothian). A chart of the proportion of people who are suitable for treatment who are receiving treatment in each board area is given in Figure 1 (see footnotes 3 and 4). The proportion ranges from well under 10% in the 4 worst areas (Orkney 3.8%, Grampian 4%, Tayside 6.3%, Highland 7.4% [see footnote 5]) to 47% (Ayrshire & Arran) and 36.3% (Lothian) in the best areas.

Health Boards	People with dementia (est)	Estimated number of people with mild - moderate AD suitable for treatment	People being/ likely to be treated this year	% of people likely to be suitable for treatment who are being treated
Argyll & Clyde	5129	1015	130	12.8
Ayrshire & Arran	4940	978	460	47.0
Borders	1705	338	60	17.8
Dumfries & Galloway	2222	440	40	9.1
Fife	4521	895	100	11.2
Forth Valley	3330	659	100	15.2
Grampian	6297	1247	50	4.0
Greater Glasgow	10149	2009	407	20.3
Highland	2719	538	40	7.4
Lanarkshire	5809	1150	321	27.9
Lothian	9052	1792	650	36.3
Orkney	266	53	2	3.8
Shetland	247	49
Tayside	5576	1104	70	6.3
Western Isles	423	84

Figure 1: Proportion of people with Alzheimer’s disease who are likely to benefit from drug treatment and who are actually receiving treatment Not every patient who receives treatment with one of the drugs will benefit. 3.4 Waiting lists 5 boards said they have no waiting lists, although these included Grampian, who until July 2001 were not funding treatment. 6 said they had waiting lists for assessment rather than for treatment, ranging from 3-6 weeks (Borders) to 3 months (Lothian, due to staff shortages) and Fife said that sometimes the wait to be seen at the memory clinic exceeds 3-4 months, but consultants will then assess people at home and treat them if appropriate. Highland and Forth Valley were unable to provide specific information. However, we are aware that the waiting list for treatment in Forth Valley is 9 months. Forth Valley Health Board say that they are tackling this problem and that a final report is due shortly. 3.5 Which drugs are available? 9 boards do not restrict which drug can be prescribed. The remaining four all restrict treatment to particular drugs dosages, although all say that they are considering changes. The two most restrictive are Grampian and Greater Glasgow. In Grampian, only donepezil is currently available for prescription; they expect application to be made for the use of the other two drugs soon. In Glasgow, their local protocol currently only allows the lower dose of donepezil, and if that is unsuccessful, a patient may be tried on rivastigmine, but at the time of replying they were about to introduce a new protocol which lists galantamine instead of rivastigmine as the second line treatment and introduces greater dosage flexibility. 3.6 People with learning disability and Alzheimer’s disease Of the 11 boards which responded to this question, 10 state either that they will treat each such case individually or that people with dual disability would be assessed by other methods. One (Borders) said that they were not aware of any patient with learning disabilities who might benefit. These responses do not tally with anecdotal evidence received from callers to the Dementia Helpline who have reported being refused treatment because someone with Downs syndrome and dementia was unable to reach the minimum score in the MMSE test prescribed by NICE/HTBS.

4. Conclusion

4.1 For people with mild to moderate Alzheimer’s disease hoping to receive drug treatment, and for their families, there remains a postcode lottery. People living in the areas with better provision, such as Ayrshire and Arran or Lothian, are between 5 and 12 times more likely to receive treatment than people in the areas with worst provision: Grampian, Tayside, Highland and Orkney. Provision in a further 6 areas (Argyll & Clyde, Borders, Dumfries & Galloway, Fife, Forth Valley, Greater Glasgow) is well below the level we estimate is needed. 4.2 The work in Ayrshire and Arran and Lothian shows that much greater uptake is achievable, although even here there may be scope to increase the numbers of people given the opportunity to try these treatments. But it remains a matter of great concern that, four years after the launch of the first drug treatment for Alzheimer’s disease, the uptake is so low in so many areas. Given the health boards’ insistence that there are, in the main and with the exception of Forth Valley, no long waits for assessment and, once assessed, no waiting list for treatment, it would appear that the disparity in treatment levels is not solely the result of budget limitations, but must also relate to local practice. It is unlikely that the need is so variable; what is more likely is that people are not being offered referral by GPs and assessment by hospital specialists or at memory clinics. It is vital that those health boards with poor uptakes review local practice and improve it. Alzheimer Scotland – Action on Dementia would like to see the memory clinic model far more widely used across Scotland; it is notable that both Ayrshire & Arran and Lothian use variations of this model. 4.3 Two health boards require special comment. Grampian has only very recently allocated any money at all to these treatments, and even now has budgeted only £25,000 for the remainder of this year, which is seriously inadequate. It also makes no guarantee that this amount will not be revised downwards as part of a prioritisation exercise for novel treatments. Forth Valley has a waiting list of more than 9 months; in the north sector of Forth Valley, the wait is close to a year, and over 70 people are waiting. A delay of this length can reduce the effectiveness of the treatment and risks rendering many people ineligible for treatment, as their condition deteriorates and they can no longer meet the criteria. Both Grampian and Forth Valley must give priority to addressing this situation urgently. Alzheimer’s disease is a progressive illness. To deny people treatment which could help or to make them wait for so long condemns them and their families to suffer unnecessarily not only the effects of the illness, but the stress of knowing that if they lived elsewhere they could be treated. 4.4 People with Downs syndrome are at very high risk of developing Alzheimer’s disease relatively early. The evidence suggests that most health boards have not systematically addressed treatment of this dual disability. The NICE/HTBS guidelines do not provide a clear protocol for how to assess people who cannot take the MMSE. People with Downs syndrome and Alzheimer’s disease deserve treatment of the same basis as anyone else. Health boards must develop protocols that ensure that they are not excluded from treatment as a result of their dual disability.

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Footnotes

1. Argyll & Clyde, Ayrshire & Arran, Borders, Dumfries & Galloway, Fife, Forth Valley, Grampian, Lothian 2. Lanarkshire, Orkney, Tayside 3. We used the GRO (Scotland)1996 population survey and EURODEM prevalence figures to calculate the number of people in each health board area with dementia. We then made the following assumptions, from Alzheimer Scotland – Action on Dementia (2000) Planning Signposts for Dementia Care Services: 55% of people with dementia have Alzheimer’s disease; 72% of those with Alzheimer’s disease are in the mild to moderate stages, with the conservative estimate that only half of those with mild to moderate Alzheimer’s disease will be suitable for treatment, due to other illnesses or treatments incompatible with these drugs. 4. Hofman, Rocca, Brayne et al (1991) The prevalence of dementia in Europe: a collaborative study of 1980-1990 findings. International Journal of Epidemiology; 20: 736-748. 5. The Highland figure is based on their expenditure in 2000, as these were the most recent figures they could provide.