www.diabeticretinopathy.org.uk

General

NHS needs changes

David Kinshuck

 

Improvements

The NHS is making tremendous improvements in diabetes care. In Birmingham, patients are screened and treated for pre-diabetes for instance.

We need glucose sensor funding urgently.

 

Type 1 patients

Such patients often do not get access to expert care due to poor commissioning (BMJ 2012). We need

  1. more organised care
  2. more and earlier psychological support
  3. regular follow up addressing diabetic control, much more frequent than at present
  4. more pumps and continuous glucose monitoring
  5. In our own service we have a wonderful DAFNE programme (does adjustment for normal eating for type 1’s).  This is a really fantastic program and patients find it very helpful.  But after the program there is very little follow up and patients are often lost to follow up and their control does not improve and deteriorates instead. There is only one DAFNE nurse in the whole of North Birmingham and 70,000 patients. It is a completely ludicrous situation.

 

Screening is working reasonably

 

 

Learning from other countries

  1. We know retinopathy can be prevented, and in Iceland their has been only one patient registered sight impaired with diabetic retinopathy in the last 10y or so (personal communication 2011). Stefánsson E
    • In a population that is carefully screened for diabetes mellitus and provided with regular screening for diabetic retinopathy, the loss of vision from diabetic retinopathy is uncommon.
      Acta Ophthalmol Scand. 2007 Feb;85(1):40-5.
  2. About 10 years ago in Liverpool the director of the NHS diabetes services spoke.  She told us of a clinic in the US where there was a children’s diabetic clinic with an average HbA1c of 7%.  This is considerably better than any clinic in England and certainly than the average.  These patients were seen approximately every month by a doctor, nurse, psychologist and dietician for approximately 1 afternoon. In this way serious problems never developed, problems never became ingrained and problems were addressed quite quickly.  The patients control might be poor for a few weeks but then could be gradually corrected at future visits.
  3. I have attended talks given by Dutch diabetologists who again have most of their type I patients and half their type II patients using an insulin pump for instance and they have very good control.  One in a hundred of their patients are being lasered where as the average laser rate for patients here are having diabetic retinopathy laser treatment is 10%.  So their results were 10 times better.

Primary care does not speak to secondary care

Hospitals used to care for the difficult cases of diabetes.  They did not do it very well and have now been told to more or less stop.  Now hospital care only treats the patients for most severe problems, so the majority of patients are being treated by primary care out in the community. 

But secondary care does not talk to primary care, yet we know the  'Kaiser' model is the most effective. That is primary cares looks after the routine problems, but gets trained by secondary care, and has to work with secondary care with problem patients whose diabets is not well controlled.

As with psychiatry there is an inadequate community system and patients are left to flounder and develop retinopathy and lose their sight. Primary are needs to learn from secondary care, both working together for training and advice.

 

Avastin / Lucentis debate

Lucentis (Ranibizumab), Avastin (Bevacizumab) and anti-VEGF drugs which are given as injections into the vitreous cavity of the eye. They reduce leakage and blood vessel growth at the back of the eye, and are therefore important in wet ARMD and diabetic retinopathy.

Both drugs are now owned by Roche.  Each drug has an effect lasting 4 weeks, but another new drug Eyelea, aflibercept,  made by another company may have an effect lasting 8 weeks. The prices (in December 2012) are about, per injection Lucentis £600, Avastin £80, Eyelea £800. Only Lucentis is licenced, and only Lucentis has NICE approval. Avastin is much cheaper, but the company has not carried out the elaborate research studies with Avastin (as they have with Lucentis). Thus, as there is lots of research for Lucentis, only Lucentis has been licenced. Roche have refused to submit Avastin for a licence. Roche will not fund the large scale research for Avastin that was carried out with Lucentis.

Yet although Roche have not carried out any research regarding Avastin eye use, there are now plenty of research studies indicating it is as effective or nearly as effective as Lucentis. Avastin is in regular use round the world, and is now used more commonly that Lucentis in the US, for example.

The Royal College of Ophthalmologists and many ophthalmologists wrote to our MPs, asking NICE to consider Avastin, but NICE will still not consider Avastin use. NICE replied to the College saying that as Avastin was not in regular use they would not consider it, but of course this a Catch 22 situation…we cannot use it until approved.

In the NHS it possible to use unlicensed drugs, but their use is frowned upon when there is a ‘licenced’ alternative as there is for Avastin, that is Lucentis. So the Dept of Health will allow ophthalmologists to use it, but 50% of ophthalmologists are not happy because it is not licenced. More importantly, the funding authorities such as Clinical Commissioning Groups usually will not fund Avastin, certainly in North Birmingham.

But, as Eylea will soon be along and have twice as long an effect (and so need injections every 2 months instead of every month, for example), it may not be worth making a fuss at this stage.. but Eyelea will still be very expensive. If Avastin was approved for use then there would be more competition for Eyelea, and the Eyelea company (Bayer)  would then probably have to reduce their price.

 

Pre-diabetes / borderline HbA1c & glucose / obesity

90% of type 2 diabetes can be prevented. The increase is caused by such factors as lack of exercise /obesity /poor diet /smoking. In addition, before there is frank diabetes, there is a pre-diabetic stage. So if we want to prevent diabetes, knowing that we need incentives or payments to increase concordance, we would ideally screen incrementally for

We need to screen for obesity in adults of all ages, and children. In other countries comprehensive screening for diabetes is carried out, and this has been proven to be effective. We need QOF to address as many of these measures as practical so we can reduce the burden of diabetes. Similarly, obesity is not effectively prevented, detected, or treated.

Pre-diabetes is often not treated. When it is discovered, patients are often not told they are pre-diabetic, and not followed up when it is found. Often they become diabetic 2 years later, but the diabetes is only diagnosed 9 years after that when there are complications (lots of published evidence).