From 23 to 26 September 2012 a team of experienced clinicians from the Royal Brompton Hospital, working alongside colleagues in Vilnius, held a number of outpatient clinics and lectures with the aim of illustrating modern treatment regimes and so help further develop CF services in Vilnius.
The programme designed to this end enabled a good deal of direct patient contact and discussion between professionals and with parents. All involved consider the visit to have been successful. The success of the visit can best be summed up by an extract from project leader Rod Halls’ conclusion. There is no doubt that CF care in Vilnius is better for the involvement of CHI and the clinicians who contribute to its work. In practical ways CHI is helping the Parent Support Group do its work; it has provided equipment which does make a difference; it has shared modern treatment methods with key professional staff who have changed practice as a result; the Brompton guidelines – now the updated version – are being followed. Communication has been transformed with Dr Kavaliunaite’s contribution.
Objectives of visit
Previous discussion had confirmed that a ‘hands-on’ visit from UK professionals (expert learning sessions) would be the most productive way to help clinicians and parents learn about latest techniques. This would also emphasise, again, the importance of a multidisciplinary approach to CF care, as used in the UK, thereby continuing to challenge the more hierarchical medical model which tends still to prevail.
The prime objectives, therefore, were to treat and see as many patients and parents as practicable; and present to larger audiences the latest thinking, specifically in the areas of Physiotherapy, Psychology and Dietetics. This would then enable an assessment to be made of current practice and inform the debate about future CHI involvement.
An update – Background and current situation
The visit was the latest example of CHI’s productive relationship with CF services in Lithuania over several years, designed to deliver improvements to a service where diagnosis and treatment regimes fall below UK and wider European standards. A visit by Rosie Barnes and Tony Wolstenholme in May 2011, presenting at a conference entitled How families can help in the improvement of CF care, was followed by a trip in November by Rod Halls which resulted in a number of specific actions being agreed, viz.
- Financial support
- Shortage of funds to help with the practicalities of running the PSG was identified as a key problem. CHI agreed to provide £500 per annum for three years, in half yearly instalments, the first payment being made in February. The second instalment was handed over during the latest visit, confirmation having been received that the money is being used effectively.
- The Parent Group identified the shortage of nebulisers as a major difficulty for parents looking after their child at home. Seven nebulisers were supplied by May 2012 and are being put to good use.
- Help with translation
- Networking during the previous visit had identified a doctor working in London (Kings College Hospital) who might be interested in helping CHI overcome the language difficulties which can make speedy and effective communication difficult. Rod subsequently met Dr Ema Kavaliunaite in July and agreed a modus operandi . Since then Ema has been extremely helpful in translating several of the Team’s presentations for the latest visit and communicating frequently with the PSG. Ema trained in Vilnius and is a qualified consultant in paediatric medicine in Lithuania.
- Targeting professional inputs
- Additionally, the previous visit had confirmed universal support for ‘organising expert learning sessions’ with clinicians in Lithuania, rather than in the UK, as the most effective way of disseminating information about best practice and promoting treatment protocols to improve consistency of care.
The latest visit bears witness to this approach when the opportunity was also taken to provide colleagues in Vilnius with the updated Brompton Guidelines replacing those taken, and implemented, three years previously.
Team and Programme
The team, mainly from the Royal Brompton Hospital consisted of:
- Dr Mark Rosenthal, Consultant, Paediatric Respiratory Medicine, Clinical Lead for the project
- Nicola Collins, Senior Paediatric Physiotherapist
- Mary Jurd, Paediatric Respiratory Dietician
- Michele Puckey, Consultant Paediatric Clinical Psychologist
- Rod Halls, Project Manager(Lithuania), CHI
The visit was organised in collaboration with the CF lead clinician in Vilnius, Assoc. Professor Sigitas Dumcius.
The full programme was agreed in advance after many exchanges and was designed to provide maximum opportunity for clinical involvement and discussion. This expectation was borne out and the local and visiting clinicians felt a good balance had been struck.
There were three principal components to the programme:
- Clinical: Attendance at clinic (3 hours every morning), Presentations (1.5 – 2 hours each after lunch)
- Organisational issues
- General discussion/familiarisation spare time and social gatherings
Attendance at outpatient clinic
The team joined the staff for the outpatient clinic appointments seeing a total of 9 children (age 5-22, 10% of the total caseload). This inevitably made an already large group very large – 25 or more – discussing the full range of clinical issues with the parents and children for up to an hour or more. This approach clearly differs from the normal approach in the UK.
A range of issues emerged, covered in the Team’s reports, leading to suggestions including in particular:
- Consider restructuring the outpatient experience so patients are confronted with fewer staff – perhaps with more on to one or smaller sessions
- Provide more psycho social input recognising the positive impact this has on physical health
- Place greater emphasis on physiotherapy, getting parents to practice the correct procedures with less emphasis on expensive equipment
- Review the use of longer term nebulised antibiotics
- Establish the importance of ongoing accurate and frequent history taking to include the full range of clinical interventions
In total there were 6 PowerPoint presentations followed by question and answer sessions:
- Monday: (1) Current Medical issues and (2) Dietetics – to a range of professionals (total 20/25)
- Tuesday: (3) Physiotherapy – talk and demonstration with a child patient to a range of professionals (total 25+)
- Wednesday: (4) Psychology and shorter versions of (5) Physiotherapy and (6) Dietetics to a mixed audience total >45 including 20+ parents
The presentations were well received having been carefully prepared and translated into Lithuanian in advance, with handouts available on the day. English speaking staff were also available, allowing for simultaneous translation, which greatly aided the Q and A sessions, especially with the parents.
All the presentations were designed to impart simple messages about the most effective care, how to use equipment what/how/when to eat, how to provide physiotherapy efficiently, and how to approach the myriad psychological issues related to care, behaviour, treatment and family matters. The experienced speakers used various methods: ‘volunteers’, quizzes, rewards (chocolate bars !) – to communicate. Good stuff! The sessions were highly interactive and the parents in particular seemed pleased for the opportunity to have a fresh slant on serious issues they live with every day.
The emphasis was on keeping it simple with the tone set at the outset by Dr Rosenthal : his ‘take-away’ message was ‘treat the patient not the disease, stick to the basics avoiding the lure of more complicated diagnosis and prescribing. The doctor plays a relatively small part in the overall treatment of CF’.
The Team’s reports again reflect a number of issues, especially:
- The structure of the presentations, held in an august lecture theatre, was perhaps too formal, inhibiting involvement
- A better approach may be to have smaller workshop type sessions targeted on specific issues eg how to live with CF; what to tell your child; how to calculate the appropriate level of enzyme intake; etc.
- The importance of treating the child as normal.
The ‘spare’ time was used productively used to in various ways.
- View the facilities: The hospital has improved considerably over the last 3 years and the ward and clinic accommodation is light, airy, well decorated, clean and spacious, although the range of equipment remains limited. There are plans to centralise all Paediatric care, including CF, in an existing 700 bed (sic) Paediatric hospital in Vilnius within the next 5-10 years.
- Consider other key elements: Staffing levels are clearly well below those of the Royal Brompton and its peers, with little Psychology input and limited physiotherapy and dietetic skills. Such shortage reinforces the medical model of care and renders the aspiration to a fully multidisciplinary approach a distant dream.
- Revisit the wrangle over payment for drugs in the community: This was highlighted in the last report, and appears to have been resolved. But some uncertainty remains about who pays for Creon in some circumstances and how much (see report from the Dietician) and attempts will be made to clarify this.
- Review other issues: Disputes over health and social care boundaries continue to cause difficulty and under diagnosis remains a key problem – GPs receive so little training.
- Central Registry: There was no further discussion about a central registry or neo natal screening.
The visit went well and according to plan. The Team found the experience interesting and instructive; and colleagues in Vilnius, patients and parents are undoubtedly better informed. The Lithuanian project is alive and well with excellent working relationships.
There is no doubt that CF care in Vilnius is better for the involvement of CHI and the clinicians who contribute to its work. In practical ways CHI is helping the Parent Support Group do its work; it has provided equipment which does make a difference; it has shared modern treatment methods with key professional staff who have changed practice as a result; the Brompton guidelines – now the updated version – are being followed. Communication has been transformed with Dr Kavaliunaite’s contribution.
The key issue, however, is a combination of culture and resources. The clinicians’ reports confirm what people on the ground know themselves: that the model of care tends to be more doctor-led than would be the case in the UK. Of course, it is easy to preach ‘multidisciplinarianism’ but the key to modifying the model of care is perhaps not so much a lack of will as a lack of resources. A few more Physiotherapists or Dieticians and any significant Psychology input could transform the approach. There is certainly no lack of understanding about what now constitutes good, modern CF care.