Having successfully hidden behind Jim for a long time I find myself flushed out to make a posting!In the SMMGP September Clinical Update we reported on Marsden’s study of TOP in Addiction, which was positive about the use of this tool, and asked people to comment for the upcoming NTA consultation event at the end of this week (23rd and 24th October). The NTA introduced the TOP form to look at issues of quality rather than simply looking at performance targets (waiting times, numbers in treatment etc, a very positive move. However, I have had a number of comments back from GPs, service users and drug workers that have been largely (in fact exclusively) identifying problems with TOP including:

· Difficulties in gathering good data due to the recall of anyone, including drug users, of substance use over a 4-week period
· Difficulties with the section 3 questions on crime- in particular with clients not wishing to disclose offending to treatment providers due to being worried about what will happen to the data
· Problems with the time of clinicians in filling in this form, particularly if a client is relatively stable and are seen less frequently i.e. valuable time is spent filling in forms
· Problems with ‘performance management’ of treatment providers on whether they return the data, leading to the potential for TOP forms to be prioritised over clinical work, and the possibility that people will make the answers up rather than giving poor returns. There have also been concerns that this may lead to a ‘skewing’ of the results on forms to emphasize clients' improvement in treatment, in the belief that this will reflect well on the service providers.
· In general a feeling of lack of ownership by both service users and service providers about the content and the need for the TOP form.
· Some concerns about not giving service users adequate consent and information in general about the data collection

With the consultation event coming up I thought I would put this out for discussion. Are these views shared, or do people have different opinions? Any thoughts or comments?

A few "devil's advocate" type of comments from a commissioning perspective:
-we need 80% of TOPs completing to be able to do anything with the data, so if the minority that aren't done aren't "performance managed" to get them done then its wasting everyone's time who is doing them
-how else do we know that people in specialist prescribing do actually see and chat with their key worker at least every 3 months?
-how else can we "commission outcomes"?
-how else do we convince gov. ministers that we're doing a good job?
-wouldn't it be good this time next year if Paul Hayes can tell Mark Easton what proportion of people in treatment have improved their health, stopped shoplifting, worked at least 2 days a week etc etc when he throws the "only 3% of people have stopped using drugs" rubbish at him?

I'm a big fan of TOP in principle but am concerned that the results don't always reflect reality for some of the reasons you say and would be interested in others views on this
tony

Was ever a topic more dammed by faint contribution.
I know it does not remotely tickle our interest, but it is hear to stay for sometime yet.Revisting this post I now in an instant understand why I have so much difficulty in getting drug workers of all hews to fill these confounded things in.

Having been to one of the TOPs discussion meetings, I found the delight of the TOP researchers is quite infectious. What a lot of data! More than anywhere else in the world! But what does it all mean?

And hearing John Marsden's ("Top" Secret) initial analyses is fascinating but scary. Which Region has the "best " results ?(we are not to know) . What constitutes "best"? How to measure "value added" (like schools) in order to compare achievement in different areas, or by different providers?

I would love them to remove all the crime questions, as I am not sure how they feel they have any validity at all. Either people put N/A or they put 0, unless they were actually caught on camera breaking into the car.. "Garbage in, Garbage out" . And when that has commissioning implications, I would prefer these questions to be removed to the ordinary confidential history part of the consultation, where they more properly belong. ("and have you managed to stop shop lifting yet?")

I would like to see much less frequent TOPs after the first year. (e.g. 3/12 TOPs for the first 12 months of "treatment", then annually for life ?) They feel like a time consuming intrusion into a precious GP appointment slot, especially when the person has been on a script for 10 years, is getting on with their life, and only seen avery 3/12, so that the TOP form appears at every visit. For the most stable people they seem to have no personal relevance and certainly no clinical value.

I am lucky that in Birmingham we have primary care based drug workers who are at present filling them in, but around the country that is often not the case. Unless the TOP forms can be made more GP friendly, we are at risk of missing the data from our most stable patients.

And then there's the question of gaining valid informed consent . The forms give the appearance of being clinical tools which might have some therapeutic value to the individual, but aren't they much more research and service monitoring tools which have inserted themselves into our clinical space? Where is the grassy knoll?

This message has been edited. Last edited by: judith yates,

Like Judith, I dont get on with the crime questions. I also have issue round the inxclusivity around injecting as it gives the assumption all harm is related to IV drug use.

There will be many more problems with TOP soon we have been trying to order new ones for many weeks with no sucess.If we are expected to fill them in it would be helpful to have some.
http://www.nta.nhs.uk/publications/publications_order.aspx

I understand that another 500k have been ordered and should be available in 10 days.

In the mean time, TOP forms are available to download and print from the NTA website. There is even a printer friendly (i.e. low ink) version.

Hugo,
Thanks for the information.

The honesty here is very commendable and points to TOP being to all intent and purposes dead in the water. The crime question is if asked rarely answered with any sense that you are getting the truth,the whole truth and nothing but the truth and is methodologically unsound.
Equally the large numbers of GP's who do not have workers to attend to this form will be missing out.

I hope it still has a few flickers of life which could be fanned a bit?

I hope that having this astonishing scheme to get the same form filled in across the land will contribute to a continuing ironing out of post code lotteries, and the information being gathered is fascinating, if complicated to interpret.

And clinically, the sliding scales can sometimes be illuminating, and aid communication. (some people feel they are much happier than I expect them to be)

I just don't think the crime questions can give anything but inaccurate information.

I have a confession to make: I have never completed a TOP with a patient. Our keyworkers do it, and i try nd remember look at the results when we do a clinical review. I feel humbled, as I have always advocated for it on principle, along the same lines as you have Judith -but I've been using the vicarious experience of the keyworkers who tend to like it (so long as not feeling pushed for time). Now i think its time I spoke from personal experience! I'll let you know when i have some....

the recurring theme that comes across from so many drugs workers you speak to is that drug users don't give correct answers to the crime questions. I think this is what stimulates so much of the "validity" of TOP debate. My feeling is that there is validity in asking patients about drug use in the last four weeks/28days as that has been standard in all previous validated tools e.g. Maudsley Addiction Profile. I think though it is legitimate to ask whether there is "social desirability bias" at play though on the crime questions and whether police data is a more valid way of collecting this information. Social desirability bias i.e. on sensitive topics the respondent giving you an answer they feel comfortable with rather than a true account of their experiences/behaviour is a real problem in research in this field -I've just overseen hundreds of questionaires completed in the prison setting and no-one admits to either injecting in prison or sexual activity in prison.
An annual TOP for "low risk" drug users is maybe something that could be fed into the consultation. This reminds me so much of the "care programme approach" that came into the mental health field in the mid/late 90s in response to a high profile homicide. clinicians up and down the land complained about time constraints and how the process detracted from patient care. "standard" and "enhanced" care programme approaches helped to focus energy on those at higher risk. I appreciate we're not talking about care planning but I think the tension of "process" competing for time with patient/client "contact" is one that has been around us for a long time and is probably here to stay

http://www.smmgp.org.uk/download/news/news003.pdf
Says it all really.Any flicker of acceptability has been well and truly doused.
Looks like greater numbers are begining to recognise that the Emperor is stark naked.

Is the emperor naked or perhaps inappropriately attired? We know he hasn’t got any shoes on (validity of the crime questions) and maybe the rest of his outfit doesn’t protect him from the elements this time of year, but maybe not completely naked? The recent article was interesting and a real concern that TOP requirements can be having a detrimental effect on practice-but I was surprised that the GP was completing the TOP in the same way that I would be surprised if a consultant psychiatrist or clinical psychologist was completing it if someone was receiving a specialist prescribing or CBT service. Surely it’s the responsibility of the “key-worker” (whatever one of those is!).
Treatment “outcomes” (ie. positive changes) are more than just a commissioning issue. Nationally NTA have to convince ministers that not only are X number of people in treatment but that as a result of treatment, health and social functioning has improved and, of course, shoplifting has reduced! But being able to demonstrate the impact that investing in treatment is having is vital at a local level. If the ring-fencing on pooled treatment budgets is lifted in a couple of years time and the funding is added to Area Based Grants (the big pooled budget local areas receive)-in how many areas will police chiefs be demanding that the money continues to be spent on drugs treatment because it reduces crime, or local councillors insist it continues because their local neighbourhoods have seen the benefits. I’ve been at Local Area Agreement/Area Based Grant meetings in the last 12 months since the funding for young people’s drugs education and preventative work was added to ABGs and they’re often nothing more than bun fights. Winning local public and political support for what we do by being able to demonstrate the outcomes/impact of treatment isn’t just the DAT’s problem but needs to be owned by all. I do think that TOP can help us to do this and there is a danger of throwing out the baby with the bath water. Maybe, though, it is time to re-evaluate its use and modify its use if necessary: is there a better way to evidence that treatment reduces crime than self reporting? Should more stable people in shared care still need to have a TOP completed every 12 weeks? Etc, etc.

I was thinking further on the TOP's form and criminal involvement around it being a research tool. My concern revolves around lets say in 24 months an average of 500,000 forms being completed and only 3% of service users admitting to any current criminal involvement. Would or could this be translated as,there being no significant link between drug use and criminal activity, meaning many of the DIP services and other criminal justice programs saying goodbye to funding and interventions for people in the criminal justice system, sending them back to reduced access to drug services or health care...

I don't feel we should be too concerned if the emperor's clothing is not as yet perfect. After all didn't lamborghini esque prestige cars go through a prototype phase? The strengths of the TOP tool are it's undoubted validity around drug intake questions, it's brevity and the fact that it's a national tool. Primary care generically is used to high numbers (as gatekeepers to specialist services) of often stable drug users. It's these factors I think that lead primary care clinicians to question whether in such sub-populations less frequent monitoring would free professionals to have more clinical time withought compromising on quality of data??

Hopefully not Will - the links between drugs, crime and treatment are well evidenced -eg. the new study just published by NTA
http://www.nta.nhs.uk/publications/documents/nta_changes_in_offending_rb35.pdf

I do think that we need to be honest about the validity of the crime questions and more importantly work out ways to evidence this locally.

very well put Dr. Nat. I also think the injecting risk behaviour and health & social functioning sections are also relatively straightforward and valid (though is there a risk that the validity of the "number of days in paid work" question could be undermined if some one is working "informally" and links between treatment and benefits are developed as are currently being debated? Maybe the emperor doesn't have a hat either?). But, as you say, Rome wasn't built in a day-and thankfully they didn't call it a day when it seemed an impossible task. Interesting point you make about generically primary care being the gatekeeper for specialist services--in many areas specialist secondary care services are still the gatekeepers for primary care for drug users.

ah ha. who's the gatekeeper - well that's another post for more discussion in its own right.....

In fairness to TOP when you ask patients the questions on Physical or mental health sometimes you get interesting results from people who I'd imagined to be on ahem top of the world.
I'll never agree with the crime questions. I do think TOP does need reducing in terms of how often the TOP is used and I'm sure the NTA will have looked at this.

RE: Data collected with TOPS.
Have just found out that the data collected from TOPS is disgarded if not inputted in to the database within 14 weeks.. seeing as we were informed that TOPS should be done every 12 weeks as part of care review (as well as start and end of treatment) we have now been asked to do these around 8-10 weeks so there is more time for the data to be put on the data base or it is not counted i.e a wasted exercise and time..
Having found this out and having read the letter from perseverence's link I think it's emphasised how politically driven our work has become... I find that so demoralising and feel that the clients are being regarded as data sets for the Government.. p.s this is my own view and NOT that of the organisation I work for..