Month: September 2014

The Care Act 2014

With Part 1 of the Care Act 2014 coming into effect in April 2015, it has far reaching change to the provision of care and support. Part 2 comes into effect April 2016 which includes the cap on care costs.

The act:
– creates a new duty of promote wellbeing in individuals with care needs
– gives carers rights to support on a similar basis as those they care for
– creates a new universal duty to prevent reduce and delay the need for care, which includes those not receiving
– creates a national minimum eligibility threshold
– creates a duty to provide independent advocacy, where someone has substantial difficulty being involved in the
process and there is no one to act for them
– sets a cap on the amount people will pay for eligible assessed care

For further details go to: The Care Act 2014
The government has also produced a series of two sided fact sheets.


Neurological Alliance national survey

Thanks to everyone who took part in the Neurological Alliance patient experience survey over the last few months. The total number of responses was 6,916

The highest number of responses was from those diagnosed with multiple sclerosis and migraine and 178 people stated that they were awaiting diagnosis.

The Neurological Alliance will be analysing the results by condition and region and we hope to announce their report later this year. In the meantime, NNA collated over 42 responses on behalf of the national alliance and we will be discussing the information provided to see how it helps with setting our priorities for the coming year.

To keep in touch with the national alliance follow this link:

Parkinson’s – it’s in the genes

Scientists the Parkinson’s UK fund have discovered changes in 3 genes that may affect brain function – including memory and thinking – in people with early Parkinson’s.

The discovery, in the journal Brain, has been made by researchers in Cambridge and Newcastle as part of a 5 year long study of Parkinson’s dementia funded by Parkinson’s UK.

Over 200 people with and without Parkinson’s took part in the study that investigated if differences in genes commonly seen in people with Parkinson’s were linked to changes in how the brain works.


Neurological Alliance: Is localism working for people with neurological conditions?

Survey findings and recommendations September 2014

Read the full report

Neurological conditions have historically been poorly prioritised in the health and social care system. Neurological conditions are unique compared to other long term conditions – they are often not preventable, fluctuate considerably, can deteriorate rapidly and they last a lifetime. Lack of understanding and prioritisation has resulted in neurological services which are neither efficient nor person-led, creating a system which does not serve budget-holders or people affected by neurological conditions.

National policy and public affairs work remains important for neurology (particularly in relation to the direct commissioning responsibilities of NHS England and the broader NHS improvement framework). Increasingly however, the policy and influencing levers available to bring about better services are at local level. On 1 April 2013, the Health and Social Care Act 2012 came into force, bringing with it many new structures and arrangements for the NHS and social care in England. It created 211 new Clinical Commissioning Groups (CCGs) which control around 60 per cent of the NHS budget and decide which services to fund according to local needs. Health and Wellbeing Boards (HWBs) in each local authority area bring together health, social care and public health leads to develop a local Health and
Wellbeing Strategy (HWS) which informs commissioning plans across health and social care.

The new system also places greater emphasis on the role of people affected by neurological conditions in improving services. The most visible manifestation of this is local Healthwatch. This, along with other patient involvement mechanisms in the new structures, offers new opportunities for people affected by neurological conditions and their representatives to influence the health and social care system. People affected by neurological conditions need
to be equipped with the knowledge and support to effectively engage in new local structures. Local structures need to be equipped to allow for engagement with a population that has specific needs, such as the cognitive issues experienced by many people with neurological conditions.

Another characteristic of the new system is that increasingly decision-makers (politicians and commissioners) want to engage with patient organisations on a platform that is wider than one individual condition. Individual charities have different strengths, structures, and objectives. However the overall aim, stripped right back, is the same: to improve services and quality of life for people affected by neurological conditions. Many of the challenges faced by people affected by neurological conditions in relation to health and care are similar. This report is the first step in our response to the local influencing agenda. The recommendations outlined in this report show that we all have a part to play in
understanding and engaging with the new health system, and ensuring people affected by neurological conditions are able to do so.5

Summary of findings

  • These findings derive from a survey of 160 staff, volunteers, people affected by neurological conditions and carers which was open to complete between 29th January and 25th February 2014.
  • The majority of people surveyed take  part in engaging and influencing activity, but overall they feel this has become more challenging since the changes to the health and social care system in April 2013.
  • Staff members have a higher level of involvement in influencing activities within the new structures than volunteers, service-users and carers (with the exception of GP practices).
  • The most widely-used forms of engagement include attending stakeholder events and receiving newsletters and updates.
  • A considerable percentage of people, including staff, volunteers, people affected by neurological conditions and their carers are unaware of HWBs, local Healthwatch and Strategic Clinical Networks (SCNs) across the country.
  • A significant percentage of people are engaged in local hospital influencing activity, in particular people affected by neurological conditions and carers.
  • The majority of people surveyed work across neurological conditions because they find this to be very effective. It enables collaborative working and the ability to have a greater impact on services by representing a much larger group.
  • People suggested there is a need for health professionals, particularly GPs, to have more training and education on the range and complexities of neurological conditions.
  • Patient involvement was identified as key to achieving better neurological services locally, and patients need to be encouraged and supported to be proactive in these structures.
  • Respondents suggested there is a need for a neurological conditions champion within GP practices and other structures.
  • The barrier preventing the largest number of people from influencing locally is lack of knowledge about available opportunities for engaging with and influencing the new structures.
  • Time constraints and limited resources also prevent many people from effectively engaging and influencing locally.
  • The most common form of support that people require from the Neurological Alliance and other charities includes information resources on how the local structures operate and available routes for getting involved in their activities.

Join us at our next meeting Wednesday 8th October 10.30 am at the Hub

Health and Wellbeing Hub open for business in Eden

Penrith hub

Back L-R: Volunteer, June Mitchell, Hub Coordinator, Hazel Laithwaite, Penrith Hospital league of Friends, Chris Mitchell and (Front) Volunteer, Marion Bruce

Eden residents have a one-stop-shop for their health and wellbeing information as the new Eden Hub opens at Penrith Community Hospital this week.

Age UK Carlisle and Eden has employed the hub co-ordinator, Hazel Laithwaite to bring together all the community activities and services together to improve local links, keep people independent and improve the Health and Wellbeing of people in the Eden District.

Carlisle Eden Mind have also employed a co-ordinator, Jo Laverick who is running regular drop in session in various locations in Penrith town centre.

The Eden Health and wellbeing Hub is open Monday, Tuesday, Wednesday 10 – 4pm and Fridays 10 – 12pm

Hazel said: “The benefits of the Hub are available to local people of all ages and can be accessed alongside medical services and offer a none medical support network.

“If you are worried about something and don’t know where to turn or wish to find out what activities and services are available in your area, we can help at the Eden Health and Wellbeing Hub.

“I am assisted at the Hub by volunteers and anyone interested in getting involved can give me a call or call into the Hub at Penrith Community Hospital.”

The Eden Health and Wellbeing Hub is one of 16 health projects across Cumbria, funded by Cumbria Partnership NHS Foundation Trust as part of the £500,000 NHS Integration Bursary Funding.

For more information about Eden Health and wellbeing Hub or to find out more about volunteering opportunities contact Hazel Laithwaite on 01768 245911 or email

Email if you would like to attend

ACFL Conference 2015

We are proud to support

ACFL Conference 2015

‘Improving Life After Brain Injury’

25 June 2015


When the health and legal community work together with the families and individuals affected by brain injury, we can achieve more.

A Chance for Life Ltd will bring together leading figures in brain injury rehabilitation and support to explore how knowledge and service partnerships can transform outcomes and rebuild lives.

Join keynote speakers and providers from across the legal and support spectrum and discover innovative new ways to improve life after a brain injury.

A Charity Dinner will also take place on 24th June 2015 prior to the main conference.

Venue: North Lakes Hotel – Penrith, Cumbria

Set in the heart of Cumbria, North Lakes Hotel offers a fantastic setting at the doorstep of the beautiful Lake District.   

The Charity Dinner will be held on the 24th of June 2015, prior to the main conference which will take place on the 25th of June 2015. We are also pleased to inform that the proceeds from the dinner will go to Headway UK and BEEP Fund Ltd.  

The evening will consist of:

– Drinks reception
– 3 course meal
– Inspirational guest speaker (tba)
– Auction of Promises
– Networking opportunities
The proceeds from the Charity Dinner will go towards:

BEEP_Logo.jpg          Headway_logo.jpg