Failsafe Discussion Days

BARS has held Failsafe Discussion Days in 2013, 2014 and 2016 giving failsafe, admin and screening staff an opportunity to discuss issues, overcome problems and share good practice, whilst networking with colleagues from other programmes.

The events have been held in Oxford and York and have proved very popular, with many people expressing an interest in attending similar events in the future, and BARS Council has every intention of organising more of these days in due course.

The most recent Failsafe Discussion Day was organised by Alyson Jaycock and Althea Smith, and took place on 8th February 2016 at York Hospital. It cost £50 per person, including lunch, and as with previous discussion days, it was well attended and proved a great success.

Althea was kind enough to make notes on the topics discussed and has produced the written report below. News of future Failsafe Discussion Days will be announced here, and whether you attended this one or not, you can join in the discussion of these topics on the BARS Facebook page at www.facebook.com/eyescreening
 

Failsafe Discussion Day

York Hospital HYMS Lecture Room 1

Monday 8 February 2016

The day was well attended with Failsafe Officers and personnel from as far afield as the South West, Wales and Kent. A lot of delegates were from the north, showing that this day is well received by colleagues up and down the country – and possibly alternating its venue north/south would be an idea for future workshops?

After introductions, we discussed our expectations of the day and it was made clear to everyone that this was to be a strictly “audience participation day”! This made the day relaxed and informal as well as informative with spontaneous questions and discussions arising from the various topics:-

Managing Elderly Patients with Ungradable Images

Alyson Jaycock (BARS Treasurer and Failsafe Officer at the John Radcliffe Hospital in Oxford) presented a talk about how these patients are managed in her Trust. Local problems are geographical as there is only one centralised referral point (HES in Oxford). For example, Banbury is 29 miles away and patients often DNA because of the distance involved. Alyson finds that extended telephone questioning means an increase in opt-outs via GPs and patient agreement. Two telephone calls are made in an attempt to get hold of the patient - this is to explain why they've been called to slit lamp - uptake has been shown to improve once explanations have been given. Some patients do opt out however.

There was a general feeling amongst the delegates that patients are not happy with the standard letter. Some programmes are adding a paragraph to the standard letter to make it more explanatory and less scary for patients. The Derby programme is also adding a link to a video which can be accessed via YouTube to show what happens. It was generally agreed that phrases such as "other pathology" can be meaningless to patients and may scare them unnecessarily.

Care home queries

Some programmes have developed a questionnaire for care homes to help assess whether patients will be suitable for screening - for example, will they be able to undergo digital photography? Are they physically or mentally fit? Are these patients at risk of developing STDR?

The West Sussex DESP have developed the “Nursing Home Assessment Form” (NHA). This is completed by either:-

• ROG grader
• Programme Manager
• Failsafe Officer

They then assess the patient for suitability for screening, and also to try and establish whether there will be any problems prior to the screening appointment, which may indicate a change of screening venue. This led to a general discussion around the issues of who makes the decision to exclude, and who fills out the questionnaire? Care home staff? Care home manager? Should the questionnaire be subsequent to, for example, 2 DNAs? It should be noted that they have some reserves about this and the form is under potential restructuring.

It was generally agreed that some care homes are more caring and robust and reliable than others. The issue of consent was brought up and it was generally agreed that more guidance is needed. For example, patients are regularly brought in for screening who clearly don't understand why they're there. There also appears to be mixed coverage for transport costs - some areas won't provide transport for screening - only for hospital appointments. GPs are also often saying that patients are medically fit for screening when they clearly aren't.

This led to a general discussion around increasing problems nationwide with room booking at GP surgeries, and costs are becoming a real issue. Many programmes have had a history of not paying to use a room in a surgery, and now GP practice managers are becoming more business conscious – and wanting to charge for rooms which have previously been used for free.

There were some reports of GPs who don't appear to regard screening as necessary for their patients because there's no financial benefit for their practice, and this led to a general discussion around the problems of what to do with these patients – should they be put into HES, or kept in DES? From a commissioning point of view, the latter is safer but costs far more. Also the ubiquitous problem of patchy reporting back to DES is ongoing, and this led to a large discussion around the area of HES referral and lack of HES capacity for follow up appointments:-

Payment/Commissioning

Block contract or a set tariff (per patient screened) means so much money per screen but this dilutes the amount of money available for screening as a whole. Commissioning needs to be clear for routine screening and surveillance alike as routine screening is commissioned by NHS England and patient appointments relating to known pathology are generally commissioned by CCGs. Some programmes are using routine screening capacity to see surveillance patients which blurs the commissioning lines. This can become compounded if a programme works on a block contract basis as they receive a set amount, regardless of the number of patients screened, and this is generally calculated on data before higher frequency surveillance pathways existed. The addition of extra patient activity being completed by screeners, which was historically done by HES, serves to dilute the patient unit price in the block contract. For programmes on a tariff, this affects them financially to a lesser extent as they receive a fee regardless, however the routine screening commissioners (NHS England) will probably question why they are paying for surveillance patients (R2, M1) other than the pregnant patients.

Any pathology cases should be funded by the CCG. It was generally agreed that there is a role for a failsafe operative within ophthalmology - Oxford has just obtained funding to put someone in post to try this out but the early signs are that it is going to be too much of a job for one person.

Some programmes have an "advanced ophthalmology module" - this helps with tracking patients in HES. There was a great deal of discussion around this - the problem of HES follow up and lack of appointments so patients fall outside the required call back time. Patients are pulled back to screening as Failsafe if they've not been seen within 12 months. The safest option can often be to re-refer, even though this puts the numbers at ROG up. Some Failsafe officers are chasing patients who are sitting in HES at 15 months – but this can be around 200-300 patients per week, which is a lot of telephone calls to make. Delegates wanted to know if  this being discussed at programme board level? Or are the Programme Board more concerned with other KPIs? To try and get round this, Derby have set up a specific Performance Meeting with the PM, Clinical Lead and assistant manager from HES (the person that does the booking) so that performance problems are the key items on the agenda and not getting lost in the rest of the stuff at programme board level.

A further problem is the confusion experienced by patients who wonder why they're called back to screening when they believe they're still under HES. Recalling to screening is a Failsafe to ensure the patient is safe, even if it's not necessarily the best for the patient.

There was a lot of discussion around the frustration of patients who are being seen in HES but the letter to DES does not provide an NSC grade. Data cleansing is key because DES cannot assume that patients in HES are having their retinas checked. Sometimes the doctors won't even tick a simple tick box to say they've checked the retina... Some Failsafe officers are checking well before the deadline because of the delay (or complete lack of) in getting information from HES. This is especially a problem for non-NHS programmes, eg Medical Imaging. Should the National Team be looking at these because the objectives are simply not achievable? The issue seems to be around the 12 month deadline - if this was removed from the objective it wouldn't be such a problem, ie. once the patient has been referred to HES, they become the responsibility of HES and not the screening programme. What will happen when the extended screening interval comes? How will the software cope?.....

"No longer diabetic"

Alyson Jaycock presented her talk from BARS Conference 2015 in Bristol. This is regarding the patients who, for example, have had bariatric surgery, a pancreatic transplant or significant weightloss and who are now medically considered to not have diabetes - but only following confirmation/notification from the GP. Oxford audited this in 2014 when they looked at 352 patients. National guidance is that these patients should have continued screening because they are STILL at risk of developing DR.

Of those 352:-

• 179 were never diabetic (there was a coding error initially)
• 9 had gestational diabetes
• 87 were glucose intolerant
• 7 were "other"
• the GP did not return the form in 70 cases
• 5 had had bariatric surgery
• 1 had had a pancreatic transplant
• 5 had significant weight loss.

How well did the GPs engage with this audit? Alyson stated it was not clear, and as a result, Oxford now keep a spreadsheet to monitor the response(s). Several other programmes have done a similar exercise and most people felt that although it is long-winded getting the results from the GP, the results do come through in the end. Patients are kept active until results come through, even in the case of patients notifying DESP - they are told they will have to chase their own GP but in the meantime, they will still be kept on the register and invited for screening. Of the patients who were invited back to screening out of the 352, 11 patients were active and 1 was M1 and referred.

Arising from this discussion was the question, what is “borderline diabetes”? The general feeling is that such a condition doesn't exist. Also, when a patient needs taking off the register for genuine reasons, is the fact that their details are on the register a data protection issue?

The feedback from these discussions was very positive and a number of Failsafe officers asked to borrow the Oxford model to trial in their own programmes.

Digital surveillance - failsafe within this group - lessons learned so far.

Do the unassessable 1/12 get re-screened? What do we do with them? Ring and explain.

How are the pregnant patients managed? Re-screened in 3 months plus spreadsheet of ANC patients.

There was general agreement that it's a problem getting notified about these patients in a robust way.

DNAs - how many strikes are programmes giving them in Digital Surveillance? The general opinion is that it should be continual and appointments are re-booked every 6 weeks. Derby puts them in on a "ghost" slot or double booked. Oxford gives them a fixed slot x 3. In answer to the question on whether they should be returned to RDS, the general feeling was no. The clinical lead reviews all the images after 3 DNAs and decides the future management:–

• return to RDS
• remain in DS
• refer to HES.

If they remain in DS, they try to get hold of them to explain the situation and persuade them to go. In actual fact, the majority of the DNAs x 3 get referred back to screening. Oxford DES are currently looking at sending a letter to the GP – this would note that these are patients who have been identified with pathology and who require further monitoring.

The general feeling is that some national guidelines are needed to standardise DS, as it's quite a complex pathway with a lot of potential for problems.

One programme is having a problem generating a referral letter to HES from DS for urgent non-DR - it will generate a letter to the patient and GP but not HES - Digital Health are looking into this. The example was a pregnant patient with swollen discs but no DR.

Open topics by request:

• There were several questions about the new Advanced Ophthalmology Module developed by EMIS/Digital Health - the general feeling is that it is good, it is easy to use, but the parameters have to be set correctly on it. There was a question raised about the lack of understanding of how it works, what it does? Richard Cragg from Derby explained that it was the backstop of Failsafe... It provides a tracker or list of patients who are in HES but who are possibly not being seen, and it can be updated with any extra information about patients, and create sub-groups of particular interest, eg ANC patients. Some programmes managed to get funding for it by presenting the business case/bid for it to NHS England. Vector software from HISL provides equivalent functionality through its “HES Patient Check” option which comes as standard, rather than as an “add-on”.
• There was a general discussion around the problems of HES referrals and appointing, which included some horror stories where medical secretaries have been found to have down-graded urgent non-DR referrals to routine referrals. There have also been instances of patients being booked onto fluorescein clinics inappropriately so as to fulfil the date requirement, but then the patient doesn't get seen by the doctor because they're on the wrong clinic.
• Discharge from HES to DES – the general feeling is that programmes are waiting until they are notified. Derby approaches HES for a list rather than wait, and they are currently working with EMIS to try and produce some software for managing these patients – this is still at the planning stage.
• No drops drop ins for drop outs! This is a concept only – the idea being to encourage those patients who have never attended to come for screening by having drop in clinics with the promise of no eye drops. The idea being that some people are put off coming by the thought of having drops and find it hard to keep to a definite appointment. In theory, any photos (even less than perfect ones) are better than no photos, so it might be worth the lure of no drops just to get them in. It would also provide an opportunity for educating the patient. In the new draft Standards (currently due for implementation in April 2017), there will be a new Standard which is “Number of Patients not Screened for 3 Years”, so DESPs will be expected to take action to encourage long term DNA-ers to attend.
• Ethnic communities - problems with low uptake around feasts and summer holidays. No real suggestions.
• Problems with entering clinic letters details onto the patient notes. Some programmes use the screeners to help do this. It was generally agreed that there is a ack of money for recruitment.
• The huge backlogs and lack of personnel was a common theme.
• There was a general feeling of disillusion that the national team aren't aware of the grass roots problems, but are too busy moving onto bigger and better things.