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Addressing the needs for People with Long Term Neurological Conditions.

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Improving Neurology Services in the New NHS: Addressing the needs for People with Long Term Neurological Conditions

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“Since the setting up of the London Trauma System in April 2010, Londoner’s have had a safer and more expert and responsive service” said Tracy Parr of the London Trauma Office in a presentation to delegates at the Acquired Brain Injury Forum for London (ABIL) meeting on May 9th.    

The service is consultant delivered 24/7 and time for emergency CT scans had been cut to less than 1 hour, leading to a significant reduction in times to appropriate treatment. Overall, more lives were being saved compared to national benchmarks. However, Tracy pointed out that although services are moving in the right direction there is still work to be done on improving access to rehabilitation.

This was picked up by her colleague, Rebekah Middleton, who discussed the initial results of data collected on the rehabilitation needs of patients with traumatic injuries in London and the use of outcome measures with this patient group. The data shows that the pathway for the severely injured group who require specialised rehabilitation is not currently optimal. Similarly the data identified considerable room for improvement in access to community services and the role of the navigator was further highlighted to be very important. The work overall will help to guide ongoing local and London rehabilitation improvements.

Brian Sladen and John Ling described a joint project between Headway South East London and Kings College Hospital, one of the Major Trauma Centres, which is helping in the co-ordination of services for people with an acquired brain injury in their catchment area.  As well as assisting with the transition from hospital to the community, this successful project has Headway coordinators advocating in a case management capacity and supporting patients and families.  The fragility of funding for voluntary sector input was noted.

The final speaker, Dr Colette Griffin of St George’s NHS Trust, another Major Trauma Centre, shared her experiences of setting up a dedicated head injury service in the south west of London. This has halved the amount of time from referral to surgery and ensured that a dedicated and experienced multidisciplinary team are available to meet the needs of the patient from admission through surgery and early intervention to rehabilitation.  Dr Griffin is keen to develop further community links, including with voluntary sector organisations, to enhance the service.

For further information about the London Trauma Office see http://www.londontraumaoffice.nhs.uk/

Download the presentations from   http://www.abil.co.uk/downloads/2011-meetings/

Enable Care’s Keith Hawley opened the meeting, challenging whether current decision-making systems were working in the interest of the person and suggesting that a chosen placement is not always appropriate for what are typically young people.

Di Halliwell and Kim Hine of Central London Community Healthcare gave some real examples of cases in which their organisation had had to reflect on learnings from five cases that they would have handled differently. They highlighted decisions that had not led to the most appropriate placement for some of their area’s patients. They also touched on the complication of many organisations getting involved in assessment and decision making, sometimes leading to a placement that exacerbates an already complex situation.

The challenges of placement can include the interference of close relatives – are they really thinking of the patient’s best interest or their own? Although for best results, involvement of the family was important. Other considerations are possible future medical complications; distance of placement from home; whether initial cognitive / physical assessment was correct; the need on occasion for close working with Mental Health colleagues; and how problematic situations – such as pregnancy and aggressive and criminal behaviour -  are addressed.

Di and Kim both concluded that we must always learn from the mistakes made and that we are all still learning. Things to consider going forward are the value of peer support when considering options for placement; that fresh eyes on a situation can be helpful; if a placement is not working, then change it; an expensive solution is not always the best; and that rehabilitation shouldn’t be a once in a lifetime opportunity. Most importantly, perhaps, is to take time for reflective practice – this should happen constantly, with the sole aim to improve.

Mark Holloway from Head First was next to speak on an independent case manager’s perspective of who chooses the rehab and service for brain injury people and why. He discussed that the knock-on costs of not placing clients correctly is huge for society and highlighted how important the relationship between client and therapist is. Making a good choice is imperative, but decision makers must do their homework. It is paramount to ensure those making the placement know the options available, establish the clinical needs and know who is funding. Often there is little choice of placement, but that does not mean that a young person placed in an old people’s home will give best results. Mark also echoed what Di and Kim had said – that resources/people change within units, so that their effectiveness may change with time.

Mark discussed some real cases, evidencing serious flaws in past assessment and placement, but concluded that there are some effective ways to get placement right. It’s important to accept that working together with all parties brings better results – in particular working closely with the client and their family. Decisions need to be based on detailed and skilled assessment of need by people who really know brain injury, the services, the client and family. Networking and sharing knowledge is vital and, reinforcing what Di and Kim touched on, recognising that sometimes structures may be the greatest barrier to success.

Keith Hawley concluded that compromise should never be part of placement decisions. He referred to a tool to help map suitability which considers important placement factors including: location; outcome / reputation; speciality / services available; cost / value for money; social milieu; quality measures; and feel. These factors will have a different level of importance for different parties – the family, the referrer, the client, the commissioner and the Care Quality Commission.

Annie Clacey of Headway UK described the Headway Approved Provider Scheme, the aim of which is to develop an accreditation service for care homes, transitional living units and respite facilities to ensure they provide appropriate specialist care for brain injury survivors with complex physical care needs and cognitive impairment.  It is still at an early stage, and has so far undertaken a limited number of assessments as part of the pilot phase.

Keith’s conclusion was that once all these factors have been considered, mapped and provided the solution to best placement, we must not deviate from the appropriateness of that placement. Other influencing factors should not interfere and we must always strive to make the most appropriate placement possible for each individual, as each case is always highly unique.

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