news and events

If you would like to receive occasional news from SWANO, as well as information about future events, simply click on the button below, which will open up a blank email. There's no need to do anything other than send the email and we will be in touch with news of any forthcoming events. We won't use this information for any other purpose.

SWANO events

Please use this link for news and event information requests only. For all other correspondence please use the links on the contacts page.

 

August 2016

Two South West talks on Post-Polio Syndrome

The British Polio Fellowhip has organised two talks on Post Polio Syndrome by Dr J Harriss, BSc MSc MD FRCP (Can).   He is the clinical lead at the Frank Cooksey Rehabilitation Unit, King's College Hospital, a senior lecturer in rehabilitation medicine at King's College London and also Consultant in Rehabilitation Medicine, St Thomas' Hospital, London, where the Post Polio Clinic, at the Lane Fox Unit is situated.

Download further details here.

March 2016

Disability & Work Capacity benefits support - useful new app.

People living with a neurological condition who face a benefit-related medical assessment and the prospect of completing complicated forms can, understandably, feel anxious about the implications for them if they get things wrong. A common concern is how best to describe the impact of their condition on daily life, especially where it may fluctuate and not follow an easily-described pattern. Such concerns can increase an individual's anxiety at a time when they really need to ensure that assessors get a clear and accurate impression of their circumstances, without which mistakes and incorrect decisions can be made, leading to further anxiety and, potentially, to reduction or loss of benefits.

seAp, an independent charity specialising in the provision of advocacy and related services, has created two useful web-apps, called C-App. Both are easy to use: one is for ESA and one for PIP, and offer guidance, advice and support on most aspects of the application process. Users can even try the sort of questions that they might be asked by an assessor.

 


 
Help preparing for ESA
 
Help preparing for PIP
     
This site covers Employment and Support Allowance, the benefit for people who can't work because of illness or disability.  

This site covers Personal Independence Payment, a benefit to help meet the extra costs faced by people of working age who have a long term health problem or a disability.

 

 

 


top

 

February 2016

MS News

MS Information Day Torquay

The South Devon branch of the MS Society will bring together an impressive and diverse range of MS professionals at its forthcoming MS Information Day in Torquay on Saturday 19th March. The event, taking place between 9.00am and 4.30pm at the seafront's beautiful Victorian and aptly-named Grand Hotel, should prove to be an interesting and informative occasion for anyone living with or with an interest in MS.

For more details, a full programme and speaker biographies please click here.

top


New consensus on how MS should be treated

As reported in October 2015, a new scientific consensus has been reached that changes the way relapsing forms of multiple sclerosis (MS) should be treated. Evidence now tells us that disease modifying therapies (DMTs) should be offered as close as possible to diagnosis. 

A consensus paper published in September 2015 outlines why early treatment is important for people with relapsing forms of MS and what led to this conclusion.

  • Download/view the consensus paper here.
  • Find out more from the MS Society here.

 

top

January 2016

House of Lords vote against cut to ESA WRAG in Welfare Bill

The House of Lords have voted against the Government's proposed cut to Employment Support Allowance (ESA) for new claimants in the Work Related Activity Group (WRAG) during debate on the Welfare and Work Bill.

The Government was defeated by a majority of 85: 283 votes to 198.

Read more on the Disability Benefits Consortium website.

top

January 2016

SWANO meetings in 2016
We've set the dates for several SWANO meetings during 2016 in a bid to ensure maximum attendance by participanting individuals/organisations:

11.02.2016
11.00 - 13.00 at Clarke Willmott, Blackbrook Park Avenue, Taunton, TA1 2PG
21.04.2016
11.00 - 13.00 at Clarke Willmott, Blackbrook Park Avenue, Taunton, TA1 2PG
30.06.2016
11.00 - 13.00 at Clarke Willmott, Blackbrook Park Avenue, Taunton, TA1 2PG
22.09.2016
11.00 - 13.00 at Clarke Willmott, Blackbrook Park Avenue, Taunton, TA1 2PG
08.12.2016
11.00 - 13.00 at Clarke Willmott, Blackbrook Park Avenue, Taunton, TA1 2PG

top

January 2016

Integrated Personal Commissioning
Many of the issues relating to good care are about effective integration of services centred on the patient. Everyone Counts: Planning for Patients describes a modern model of integrated care as being one where patients experience holistic care which is joined-up and is a single tailored package for each patient. Find out more on the South West Strategic Clinical Network (SCN) website.

In collaboration with the SCN we hope to include an IPC update at a forthcoming SWANO meeting. Watch this space for more details.

top

January 2016

Project to improve Neurological Rehabilitation Services

The South West Strategic Clinical Network (SCN), is working with health, social care and charities to improve neurological rehabilitation services. They want to involve patients and carers across the South West in order to develop the best possible service. They want to hear about people’s experiences currently and thoughts on what could be done to improve rehabilitation services.

Date
Wednesday 20th January
Time
10.00am – 12.00pm
Venue
Future Inn Plymouth
1 William Prance Road
Plymouth International Business Park
Plymouth PL6 5ZD
Map/directions www.futureinns.co.uk

There is ample parking at the venue. If you are arriving by public transport please let Annette McHardy know and help to organise taxis etc. can be provided.

Travel expenses to the event will be refunded. Attendees will be asked to complete a form and the expenses will be credited to them a week or so after the meeting.

During the meeting there will be discussion of the aims of the project and a request for feedback.
The SCN wants to know what people want from the service, as well as what they don't want.

If participants are happy to do so there will also be discussion of personal experiences.

This meeting is for patients and carers and the SCN is keen to hear from everyone.

If you are unable to attend or would prefer to be involved only by email and phone please let Anne McHardy know by email annette.mchardy@nhs.net or phone 01138247422.

top

November 2015

Right Chair, Right Time, Right Now. Urgent: response required

Right chair, right time, right nowThe Wheelchair Leadership Alliance is urging supporters of its Right Chair, Right Time, Right Now campaign to respond to a consultation on the Government's mandate to NHS England to 2020. Though now live, the consultation is only open for comment until 23rd November 2015, so time is very tight.

Find out more ...

 

top

October 2015

New consensus on how MS should be treated

A new scientific consensus has been reached that changes the way relapsing forms of multiple sclerosis (MS) should be treated. 

The evidence now tells us that, rather than waiting to see whether more relapses occur, disease modifying therapies (DMTs) should be offered as close as possible to diagnosis.

Find out more ... (link to MS Society website)

 

top

October 2015

 

South West Strategic Clinical Network

 

 

 

Can you help? Neurological rehabilitation in the South West Peninsula
All the health, social care and charitable organisations are working together in the Peninsula to improve the provision of neurological rehabilitation.  

The aim of this work:

  • To improve the Neurological Rehabilitation care given to patients, their families and their carers.
  • To make this care truly person focused. Ie actually what they want and not what is available, taking account of patients complex individual needs.
  • To treat people in the place and with the care that is the best for them.

Who is involved?
All Health, Socials Care and charities that provide care and all organisations that commission (pay for) that care.

How is the work progressing?
A steering group has been set up to oversee and lead this work but a most of the work is being carried out at a local level by enthusiasts and individuals within their own organisations outside the meetings.

Your help is needed
To ensure the work truly meets the needs of the person we need as much input as possible from patients, carers and their families. Only by having this will the work be truly person focused.

We will be seeking your help in a number of different ways, so if you are interested in being part of this please contact:

Ruth Hall
Ruthhall@nhs.net
0113 8255116 or 07796 994459

South West House
Blackbrook Park Avenue
Taunton, TA1 2PX

top

10th July 2015

New report by the National Audit Office (NAO)
A new report by the National Audit Office (NAO) has shown that the government has failed to achieve key objectives for improving services for millions of people with neurological conditions. Reviewing progress against recommendations made by the House of Commons Public Accounts Committee (PAC) in 2012, the NAO’s report shows that progress has been ‘poor’ against two of four agreed recommendations, and only ‘moderate’ in the other two.

Commenting on the report, Arlene Wilkie, Chief Executive of the Neurological Alliance, said: “Three years on from the Public Account Committee’s report, it is unacceptable that so little progress has been made in vital areas that were identified as needing urgent improvement. It only adds to the sense that people living with neurological conditions are not seen as a priority within today’s NHS. We need action so that the needs of millions of people with complex conditions must no longer be overlooked.”

Key recommendations that have not been achieved include:

  1. Access to services
    The government has failed to use levers such as the clinical commissioning group outcomes indicator set to improve access to neurology services across the country and as a result neurology is mentioned in only half of local strategies.
  2. Improving data
    The government has failed to rectify the shortage of neurology data, which means for example that the NHS has no record of the numbers of neurology service users and no effective measure of patient outcomes.
  3. Care planning
    The government has failed to ensure that everyone with a long-term neurological condition has a care plan which means that their changing care needs are simply not being met.

Neurology services continue to suffer from a range of issues including highly variable access to specialist expertise, long waiting times for diagnosis, and poor care planning and coordination, as set out in the Alliance’s Invisible Patients report and the recent acute neurology survey by the Association of British Neurologists. The Neurological Alliance will now write to the PAC calling for a full review of neurology in light of the NAO’s findings.

top

12th January 2015

The Invisible Patients: a new report from the Neurological Alliance
The Neurological Alliance has launched a new report, The Invisible Patients: Revealing the state of neurology services. Bringing together the findings of the Neurological Alliance's inaugural quality of commissioning audit and neurological patient experience survey, the report identifies significant variation in the quality of the commissioning of neurological services among clinical commissioning groups (CCGs). Findings include:

  • The Invisible PatientsOnly 14.7% of CCGs have assessed local costs relating to the provision of neurology services

  • Only 20.4% and 26.2% of CCGs respectively have assessed the number of people using neurological services and the prevalence of neurological conditions within their area

  • Only 33% of CCGs obtain vital feedback from patients in regards to the neurological services they commission

  • These issues have a significant impact on patients' care, with 58.1% of patients having experienced problems in accessing the services or treatment they need.

 

In response, The Invisible Patients sets out a number of recommendations. Find out more on the Neurological Alliance website.

 

 

 


Across the NHS South West, there are estimated to be nearly one million people living with some type of neurological condition. Check out the figures here: The number of people living with a long term condition in the NHS South West area

about swano | terms of reference | condition factsheets | swano contacts