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How to...shift coeliac follow-ups to primary care through PBC

Dr Tony Brzezicki explains how two PBC groups in Croydon successfully negotiated a LES as part of a new improved pathway for patients with coeliac disease

Dr Tony Brzezicki explains how two PBC groups in Croydon successfully negotiated a LES as part of a new improved pathway for patients with coeliac disease

In 2006 Croydon PCT started a systematic review with its PEC clinicians of the specialties provided by our acute trust – the Mayday Hospital. At that time, achieving financial balance was a challenge for the PCT.

For the clinicians and the two Croydon PBC groups C4 (Combined Croydon Commissioning Consortium) and N35, the aim was to transfer care that could be done in a GP practice away from hospital and back to primary care. Value for money was a key driver for PCT managers. The PBC groups wished to try to provide patient-centred care, ideally within primary care and properly funded (if non-core work).
The PBC philosophy was to develop schemes that could be done by all practices – not just those with specialist interests.

A ‘total system' approach was needed. While a group of GPs could have developed the LES scheme, the hospital could not run multiple schemes for one condition.

We were aware that the follow-up of coeliac disease patients was not as good as it could be, with testing very varied and some patients having no follow-up at all.

Two years on, more than two-thirds of practices in Croydon have signed up to the LES and have made a recurrent annual saving to the PCT of about £40,000.

The first meeting

C4 had already had exploratory talks with the GI consultants and we mutually agreed to hold a round-table discussion to look at future developments in gastroenterology.

A meeting was arranged to include:

From the Mayday

• two consultant gastroenterologists
• Mayday management representative (PBC liaison officer)

From the PBC groups

• chairs of both PBC groups (one was also PEC chair, the other a PEC GP member)

From Croydon PCT

• director of primary care commissioning
• assistant director of primary care commissioning
• public health officer
• project support officer
• PCT pharmacist
• finance representative.

From that meeting came a number of projects. Some were PBC-led, and others consultant-led. These were:


• pathway for managing abnormal LFT in primary care
• transfer of coeliac follow-up to primary care


• direct access gastroscopy
• transfer of Barrett's disease follow-up to primary care
• review follow-up of inflammatory bowel disease.

Accepting the transfer of work to primary care

Mayday managers and the consultants were very aware that all of the proposed pathways would reduce activity at the Mayday. They were keen, however, to maintain good relationships with the emerging PBC groups and hold on to their share of GI referrals now that Choose and Book had arrived on the scene. They also wanted investment in some new services out of the projected savings, including:

• Helicobacter pylori testing for GPs
• a specialist inflammatory bowel disease nurse.

From this discussion it was agreed that following up patients with coeliac disease did not require specialist input, and that attending hospital did not add any value to the patient care. It was accepted that primary care could follow up these patients using an agreed pathway.

Involving stakeholders

41213123To take PBC projects forward, the PCT had set up a project board. This included all the relevant PBC staff, PBC representatives and others as required to develop cases. The coeliac disease LES (see box left) was developed at this meeting alongside the other GI projects and other separate redesign projects. Much of the discussion about the medical aspects of the pathway were discussed outside this forum by one PEC GP and one consultant.

At the first project board meeting, it was clear we had not included all relevant parties. The Mayday dieticians rightly felt they had a lot to contribute, and I was aware of a Croydon branch of the UK Coeliac Disease Society. It was agreed both stakeholders be invited to meetings.

The different agendas

After the next meeting, with all groups present, it became clear that what had started out as a seemingly straightforward concept had now become much more complex. The agendas were as follows.

The Mayday

• The introduction of H. pylori testing became almost conditional to progress the other pathways.
• Dieticians felt coeliac disease was their core work, and they should see all new patients and direct access to dieticians should be part of the coeliac pathway.


• Clarity on whether the combined pathways would pay for the service development of H. pylori testing.
• Concern that prescribing of coeliac foods would escalate drug spend.
• Uncertainty that extra work was non-core and should be rewarded by LES payments.
• Concern primary care would provide the quality of care necessary.
• Concern the new pathway could increase costs.


• Very happy to be seen by their GP and not have to attend hospital.
• Anxious to ensure their right to have appropriate quantities of gluten-free foods prescribed for them.


• Adamant activity was non-core work and should be appropriately recompensed (supported in this view by the LMC).

We approached each issue one at a time, putting those that were not readily resolvable on the back burner until later, or until more data had been gathered. So how did this pan out in real life? The clinical pathway was rapidly agreed between the clinicians. This took several meetings and a flurry of emails. It was agreed:

• Coeliac disease patients should be screened annually for
– malabsorption
– liver disease
– compliance with the diet (to be checked at appointment with GP).

• New patients would all see the dietician, and GPs would have referral guidelines to refer back where necessary.

• Patients with coeliac liver disease would be referred to the outpatient consultant. Those with malabsorption could be referred back to a consultant or to a dietician.

Patient power

Having patient representatives within the group was a great force for the whole process. We were able to reassure them the pathway was clinically safe, and care would not be compromised. They were very happy to attend their GP – where until now they had all received a varying amount of gluten-free foods on prescription.

They welcomed the opportunity to know, for the first time, exactly what level of service they should receive. The scheme was seen as a significant improvement in quality, as the care of coeliac disease patients had previously appeared to be badly organised, with testing varying wildly, and some had no follow-up at all. Patients could now make appointments to suit them, and not have to travel to hospital.

Prescribing gluten-free foods

A major success was the tripartite agreement between the dieticians, PCT pharmacy team and patients on what was seen as an appropriate volume of gluten-free food that could be prescribed on a monthly basis. For the first time GPs had guidance on how much they could prescribe – knowing that, if challenged, their prescribing had been agreed through a robust process that included patients.

They did not have to worry whether they were being exploited and feeding the neighbours as well as the patient on the NHS. Patients also knew their exact entitlement, where previously some had had problems accessing what they felt was their right. The PCT was satisfied that the level of prescribing was now appropriate.

When we were starting this process the Malnutrition Universal Screening Tool (MUST) for assessing adequate nutritional status was due to be launched and become policy. It was very helpful to have specialist input into the needs of our patients, and to include dietetics as a specialist service in its own right in the pathway.

It did not seem to be useful to refer back to outpatients (and pay a tariff price) only for an onward referral to a dietician – and then to be reviewed in outpatients again (thereby paying a second tariff price) before referral back to the GP.

Data problems

On the face of it the LES seemed to make economic sense, and be better for patients – improving quality, clinical governance and improving prescribing. The PCT wished to prove the project would be value for money.

In practice this proved to be much harder than was originally thought. Croydon is a data-rich PCT. Nearly all GPs download their entire patient database every six months to the PCT. Here the various Read codes are converted to common Read code set, and uploaded to a Hyercube database.

Analysis of this seemed to suggest a high number of coeliac patients in Croydon. But it was not possible to identify what percentage of GI outpatients were coeliac reviews, and what percentage of patients were receiving follow-up. If all patients on the database were indeed having bi-annual follow-up, the case was compelling – we just could not prove it. This was a level of uncertainty that was worrying to the PCT.

The committee cycle

The PCT has protocols that require the policies agreed between the clinicians to be approved by other committees. The clinical pathway had to go through the clinical governance committee and, once approved, on to the next level for approval. The prescribing guidelines had to go through the same process and be approved by the prescribing committee.

Clinicians had to attend on a recurrent basis to give exactly the same information again and again and respond to questions. This was particularly difficult for secondary care colleagues.

Finally the PCT needed to agree that providing the service qualified for a LES payment. Once that was agreed, the LES payment had to be approved by finance and the other relevant bodies to assure probity, value and governance and then be reviewed by the LMC. It was finally agreed that GPs should be paid £50 per patient per year.

Each iteration of the policy, or supporting documentation, meant further delays. For the organisation the process was clear, sensible, necessary and inviolable. But for all clinicians involved it was repetitive, frustrating and seemed over-complex.

We were lucky that our secondary care colleagues were so committed and helpful.

The launch

The LES was launched at an evening educational event, alongside several other pathways. This was led by the consultant team at Mayday and showed support for the process. GPs were able to ask questions.

A lot of time had been spent looking at how best to transfer care out of hospital. Initially this would be GP-led, transferring existing cases. Later secondary care would transfer new cases. Knowing the hospital supported the process was key for GPs and patients. The transfer had to be seamless.


So far 45 of Croydon's 65 practices have signed up to the LES. It is possible some practices do not have any coeliac patients.

A total of 378 patients had their care transferred and a further 10 new diagnoses within a year were passed to primary care. This means about 800 fewer outpatient attendances – £60,000 a year in tariff savings, which when roughly £20,000 is paid to GPs, amounts to a recurrent annual saving to the PCT of about £40,000.

Some of this money has been immediately reinvested, giving Croydon GPs access to H. pylori testing in line with NICE guidance.

The key lessons we learned were that:

• clinician leadership and joint working were crucial
• patient involvement helped hugely
• the approval process could be simplified
• focusing on ‘added value' for patients made finding the correct pathway simple.

Dr Tony Brzezicki is a GP in south Croydon and vice-chair of the Pan Croydon PBC group

Gastroenterologlist Mike Mendall (left) and GP Dr Tony Brzezicki Gastroenterologlist Mike Mendall (left) and GP Dr Tony Brzezicki Major success was agreement between dieticians, PCT pharmacy team and patients on an appropriate volume of gluten-free food that could be prescribed on a monthly basis. Major success was agreement between dieticians, PCT pharmacy team and patients on an appropriate volume of gluten-free food that could be prescribed on a monthly basis. LES requirements 60-second summary

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