Staff Bulletin May 10

Hello, and welcome to the latest NCS Bulletin J This edition we look at how access to timely, accurate information can make all the difference; take steps away from English-centricity by reaching into Wales; take a closer look at the Patient Information Forum, and generally give you an update of all of the work going on at the moment. Happy reading!

Ermin Neurological Centre

We have been working in Gloucestershire for almost 18 months now, and things have gone very smoothly in all aspects except one – Ermin Neurological Centre. This was one of the main respite facilities in Gloucestershire and has been reviewed whilst our neurological review has been going on. It has not been part of our remit and belonged to a separate steering group, but its closure has impacted our neurological review and the perceptions service users and carers have had of what we’re doing.

“…the system of no choice was wrong.” A person with PD

Unfortunately the closure of Ermin Neurological Centre caused service users and carers to question whether the consultation we had been doing was just as cursory as they felt the Ermin consultation had been, and it also put local staff in a difficult position, as they were working with the PCT in one strain, but needing to challenge them in another. Aspects of NCS’s review in Gloucestershire have begun changes around information and communication to people affected by a neurological condition. The service user reference group has designed an information booklet and the NHS-provided information services ‘GUiDE’ and ‘PALS’ are being much more widely advertised to ensure that people do have access to better information, including around respite provision, assessment criteria, direct payments, and such. We have also begun work on information on drugs, and drugs assessments through community pharmacists, and are working with the Severn Deanery on education for GPs, all of which should lead to a more informed, and therefore easier, patient experience.

“We’re just not getting the information... It’s like banging your head against a brick wall.”

Those predominantly impacted by the closure were those effected by MS, and following a number of discussions with local staff and MS Society branch members, we drafted a letter to the PCT outlining our concerns, not in the final decision, but in the way that it was implemented, which was the chief cause of upset to service users and carers. The Chief Executive of the PCT has since personally responded to everyone who has expressed upset at the PCT’s decision, and NCS are working with the PCT to plan an information road-show around Gloucestershire for service users and carers demonstrating different respite and holiday facilities in their area and different respite options outside a hospice setting. We’ll also be offering practical drop-in workshops on how to apply for a social services assessment, a personalised budget or a direct payment, and there will be professionals available throughout the road-show to informally chat over any key issues or questions that service users and carers might have.

Getting acquainted with the dragon

In England, we’re “putting service users at the heart of neurological commissioning” but in Wales, we’re “rhoi rhan ganolog i ddefnyddwyr a gofalwyr wrth ddatblygu gwasanaethau niwrolegol”, (which has the slightly different meaning of “putting users and carers at the heart of neurological service development”).

We’re all too aware that, until recently, NCS has been a bit too England-centric. We’re still only small, but we want to be able to support staff in the devolved nations every bit as well as those staff in England, and we’re beginning to look at ways we can do this.

We met with staff in Northern Ireland last year who are giving thought to ways they might want us to support them, and we’re looking to set up a meeting with Scottish staff in the near future too. However, we fell into Wales first as a result of an End of Life Care event that Sue was speaking at.

We had an information stand to fill, but didn’t want to alienate Welsh service development managers so we re-wrote our information packs, and had our mission statement adapted and translated. We showcased the new Year of Care tool, or ‘Neuronavigator’ as we’re calling it, in its progressing form, and were met with great enthusiasm – the Year of Care is a tool that will inform and progress service provision regardless of the systems in place to see it delivered.

This month, the Quality Neurology training was given to Welsh staff in a slightly different way – presenting how it works for England and exploring how it can assist them in Wales. A task and finish group report looking at care pathways for neurological conditions is currently being considered by the Minister for Health and Social Services in the Welsh Assembly Government. This presents an opportunity for ensuring those pathways are robust and measurable and we discussed with staff the possibility of creating a similar tool to QN which could be developed alongside these pathways. The group will meet again to consider this further in due course; at the moment we await the Minister’s statement on the task and finish group report.

We’re also exploring the possibility of creating a dual language version of Neuronavigator when the first version is out of Beta-testing, with the hopes that it will provide staff in Wales with a means of supporting health and social service managers and proving the benefit of services in or closer to home. We hope that, in Wales, we’re taking another step closer to ensuring that people affected by a neurological condition have access to the right services in the right place at the right time.

QN training – going strong

“A lot of the stuff we’re already having to do – this will cover it all”

Our first Quality Neurology training event took place on 3rd March and, whilst it went well, it threw up lots of questions which have caused us to hone the training a bit further and broaden out the range of resources available to you when using the tool.

We’ve created a draft contract for you to draw up with PCTs to ensure they take responsibility for the venue, the administration, refreshment costs and such to ensure that none of the aspects of the audit are skipped over. We’ve adapted and extended the training pack to equip with you all the bits and pieces you might need from questionnaires to focus group questions, flyers to crib sheets for pushing professionals to give truthful responses to the audit questions.

“I thought this was going to be something where I was given another job; that I’d have to tick another box – (I was groaning inwardly) – but this is actually going to be really useful!”

One of the things you were worried about was capacity, and we’ve created a flowchart to help you know how to work together best according to the service needs of your patch, and examples of how to share out the responsibilities of leading with different PCTs so that you’re not overstretched, but you are able to feed into, and keep oversight of, everything going on in your area. We’d like to state again that it’s a pan-neurological tool – so if you have a good Regional Neurological Alliance that work well together, there’s no reason not to use QN with them and share the workload out even further. Finally, we want to reiterate that just because you’re being trained, doesn’t mean you’re expected to go out all guns blazing everywhere you work with this – it’s a tool to help support you and you can use it where and when you want to. We’ll be on hand if you need extra support.

Kicking off in Surrey

A few months ago, we were approached by staff in Surrey to get in touch with the PCT and offer to help them redesign their neurology services. We have met with the PCT and social services who are going to fund NCS to project manage an initial scope of Surrey– one of the biggest PCTs in England – using the Quality Neurology tool. They will then further consult with service users and clinicians to look at how to redesign current services to ensure that people affected by neurological conditions are able to access the right services at the right time in the right place. We will also ensure that these health and social care services are being planned for accurately, and provided effectively to make best use of the available funds.

Following a couple of initial meetings with the PCT and social services, local staff then met together to agree priorities for the area from their perspective, so that we can ensure that the work’s focus meets both commissioners’ expectations and service users’ needs. The PCT and Adult Social Care have both put forward a key contact who will lead on this work, so the work should be equally represented and therefore the future outcomes more holistic in terms of the service being delivered.

We’ll keep you posted as work gets underway – in the meantime, if you would like to talk to anyone about this work, feel free to contact your colleagues in the area, or email Mike McKevitt NCS Project Manager, who will be splitting his time between Gloucestershire and Surrey to ensure this work is done carefully, effectively, and involving a full spectrum of people from service users and carers right through to commissioners.

The Patient Information Forum (PiF)

How many times do we hear that service users and carers want access to better information? Now skip to a seemingly different question - how much do you know about the Patient Information Forum?

These two questions are closely linked. Did you know, that PiF supports all those who are providing information for service users, or that its employees are willing to give you advice on any information-providing initiatives that you’re currently involved in?

If you didn’t, it might be that there’s a whole resource available to you that you’re not drawing on, and one which can support you, or your PCT, in providing a better class of information to the people who need it. They run various events and workshops with the aim of assisting those of us who provide information about health to service users and carers, on whatever level.

It might be that you want to find out more for yourself if you’re finding yourself in an information-providing role… Or it might be that you want to encourage your PCT, or other health service, to take advantage of PiF’s assistance and up the game on their own local information services.

Lucie Keeber recently attended a PiF Conference and her more detailed write-up is available from Charlie Peel if you’re interested in seeing it. Alternatively, visit PiF’s website and see how they can assist you, or your area, in providing a better class of information to service users and carers.

For more information visit www.pifonline.org.uk

Farewell Wandsworth!

This project is now all wrapped up. We have released a final newsletter (which is available online – www.csupport.org.uk or from Charlie on request) and have had a number of positive responses to our work there as well as exciting developments that Wandsworth wants to replicate from work we have done in other areas, including pharmacy initiative on Medicines management (copied from Gloucestershire) and involvement in an End of Life Care event (similar to one held in Cardiff).

We’d like to say a huge thank-you to local staff there who have continually fed into and overseen the work, and who will continue to be the link with the PCT now, to monitor development as the PCT put our strategic plans into action.

It’s been great to see how many service users and carers are now working alongside commissioners, clinicians and other health and social care professionals to take this work forward, with the PCT offering lay-person training on request and having a number of service users and carers on every planning group, from the individual workstreams, to the PCT’s Long Term Conditions Steering Group.

We look forward to seeing neurology services improving in leaps from now on!

A very quick update on other areas of work…

Gloucestershire: Neurological Service Review

All of the workstreams are progressing well, with a first draft of the information booklet, designed by service users and carers, nearly completed, and investigations into keyworkers well underway.
The closure of Ermin Neurological Centre created some difficulties in communication with a small number of service users and carers but as the article at the start of the bulletin shows, this has been turned around to result in an information road-show about respite, holidays, and other forms of support.

Year of Care

We have decided to call our Year of Care tool ‘Neuronavigator’ – if you’d like to have a look at its top level (very ‘work in progress’!) please do go to www.ncs.beetlebrow.com – you’ll be able to see the general look and layout of it all, although the actual tool itself is password protected.

We hope to have a tool that you can play with very soon, and will be seeking dates from you for during the Autumn to give you a half day’s ‘acquaintance’ with the tool and to get your feedback.
The MND Association’s paper tool has now been fully transferred into the webtool and is ready for Beta-testing.
Information to create the Parkinson’s disease version of the year of care is almost collated, and is beginning to be transferred into the webtool. Further validation is going on within a team of people at Parkinson’s UK, and exploration is going into the social services side of things to ensure the tool is equally robust and valid for both health and social care commissioners.
Information is being gathered for MS at the moment, with a project group within the MS Society gathering information and meeting monthly to validate all the findings to date.
A tester day was held for the MND version at the end of April with staff predominantly from the MND Association, which was very successful and proved the tool to be very simple to use, and intuitive. A few recommendations were made which are currently being considered and put into place. We are seeking a date to test it out with a group of health and social care commissioners too.
If you would like to be involved more in the Year of Care, contributing any information, or seeking to test it out, please do contact us.

Links with the pharmaceutical industry

We have presented to small groups of staff from across the pharmaceutical industry who have an interest in neurology, showcasing the Quality Neurology and Year of Care tools in particular.
We are building on these links, sending out a bi-monthly newsletter to them, and encouraging them to get involved in our work.
A number of industry contacts are interested in sponsoring their staff to take a short career break with us, working in a new field as a project manager, or assisting in the roll out of the year of care tool when it is ready.
Watch this space!

Wiltshire

In Wiltshire last year a stakeholder event was held which regional staff all attended. The PCT listened to service user and carers’ views and promised to act on them, filling them in on progress a year on.
This May is that progress report, but local staff have struggled to make contact with the PCT to take any actions forward. Sue Thomas has been approached to speak at the conference, and after liaising with local staff and attending their recent SWANO meeting, it was agreed that Sue would attend and speak in the hopes of galvanising them into action.
It was also agreed that using Quality Neurology in the area would be a great place to start, although the PCT are not in favour of this as of yet.
At this point, we cannot foresee whether this work will be a speaking engagement alone or something more, so we’ll keep you posted as to developments.

Thought leadership, advisory work and speaking engagements

We have now contributed evidence to:

We have given a number of ‘Masterclasses’ (invited by the Health Service Journal) in service user involvement, commissioning and decommissioning, and in general good practice in neurology.
We have given evidence to, and been featured in, the ‘Can you see me?’ film directed by Amanda Waring for NCPC, which, aimed at commissioners, saw it’s launch on 12th May.
We have a place on the National Service Framework for Long Term (Neurological) Condition’s leadership group

And finally…

Parkinson’s Disease Society have a whole new look, and whilst it’s not really our news, we thought we’d give you a heads up in case you weren’t in the know!

From now on, we’ll be referring to ‘Parkinson’s UK’, and our papers will all sport the new logo – if you’re involved in an NCS project and keep a template on standby for related work, now’s the time to update it, if you haven’t done so already!

If you want to have a closer look at their branding or read up on their new strategy, go to www.parkinsons.org.uk - or watch their short film: Our Story to find out a bit more about why they think it’s time to change attitudes, find a cure, and ask people to join them.

Could you use a bit of advice, some added support, or some additional resources? Are you struggling to get through to the commissioner or service procurer in your area? Do you want to know if we can help?