For our January/February/March 2016 Newsletter click HERE October/November /December 2015 newsletter click HERE July/August/September 2015 newsletter click here


Carers Trust has launched a review of the Care Act to look at what difference it has made to unpaid carers one year on. 

Carers Trust will be working with former care minister Paul Burstow who will chair a commission receiving evidence from carers and carers organisations to hear their views on how well they think the act is working – what has worked well and what still needs to be improved.


The new Care Act, which came into force on 1 April 2015, gave carers rights on a par with the people they care for, which includes an entitlement to an assessment of their own needs.

This includes taking into consideration the carer’s health and wellbeing, family relationships and their need to balance their home life with their education or work. If they are found to be eligible they are entitled to support funded by their local authority. In addition, all local authorities must provide advice and information and prevent carers’ needs from getting worse.


There are at more than five million unpaid carers in the England, often working around the clock to care for a friend or family member, who due to illness, disability a mental health problem or an addiction cannot cope without their support. 

Former Care Minister Rt Hon Prof Paul Burstow said:

“The Care Act introduced vital new rights for carers. I worked hard with the carers movement to ensure these made it onto the statute book. One year on is a good time to hear about the difference this is making to carers’ lives – the positives and the negatives.

“I am pleased to be asked by Carers Trust to chair this commission to shine a spotlight on the difference the new rights are making, as well as identifying the lessons that can help ensure carers get the support they are entitled to.”


Gail Scott-Spicer, CEO of Carers Trust, said: 

“We are keen to see the difference that the Care Act has made to the millions of unpaid carers who look after family or friends day in, day out, so we want to get their views so that we can ensure they are receiving the help and support they desperately need to carry out their role.

“The review will help us to know what is being done and what else needs to be done to better support them.”

The call for evidence opens on 1 February 2016 and will run for seven weeks until 18 March. The findings will be reviewed by a panel of experts and advisers and the details will be released in a report in summer.

They want to hear from:

  • Carers, especially anyone who has received a carer’s assessment or support as a carer from their local authority since 1 April 2015, 
  • Local and national organisations which provide support for unpaid carers, 
  • Local authority  and NHS carers leads and commissioners
  • health and  care professionals who support carers

For our January/February/March 2016 Newsletter click HERE October/November /December 2015 newsletter click HERE July/August/September 2015 newsletter click here

Do you get DLA
DWP has started to invite some remaining DLA claimants to claim PIP if they have a long term or indefinite award. This means if their DLA ends after September 2017 or if their award has no end date.   From 1st September this process will be extended to include the Kent postcodes of Dartford (DA) and Canterbury (CT). However, not everyone in these postcode areas will be contacted to claim PIP right away as claimants can be contacted anytime up until 30th September 2017.
The DWP informs us that they will continue to get DLA until DWP writes to them to let them know when it will end and what to do next.  For more information regarding the PIP timetable please click on the following link:

The following news items about epilepsy medication have been advised by Epilepsy Action


Licence for Dr Reddy’s levetiracetam suspended

6 August, 2015

The Medicines and Healthcare products Regulatory Authority (MHRA) has suspended the licence for the following epilepsy medicines made by Dr Reddy's Laboratories (UK) Limited:

  • Levetiracetam Dr Reddy's 250 mg film-coated tablets
  • Levetiracetam Dr Reddy's 500 mg film-coated tablets
  • Levetiracetam Dr Reddy's 750 mg film-coated tablets
  • Levetiracetam Dr Reddy's 1000 mg film-coated tablets

To ensure the information is up to date go to drugwatch


The Department of Work and pensions have published a Newsletter with articles on Later Life.The letter can be viewed here DWP newsletter on Later LifeTo subscribe, or provide contributions to
future Later Life Newsletters contact:This email address is being protected from spambots. You need JavaScript enabled to view it.

Strengthening care for epilepsy

Delegates to the World Health Assembly held in Switzerland in May endorsed a resolution urging Member States to strengthen their ongoing efforts in providing care for people with epilepsy. Although affordable treatment for epilepsy exists, up to 90% of people with the condition may not be properly diagnosed or treated in resource-poor settings. The resolution highlights the need for governments to formulate, strengthen and implement national policies and legislation to promote and protect the rights of people with epilepsy. It also stresses the need to reinforce health information and surveillance systems to get a clearer picture of the burden of disease and to measure progress in improving access to care.

Delegates emphasized the importance of training of non-specialist health-care providers as key to reducing the epilepsy treatment gap. In low- and middle-income settings, strategies to improve access and affordability of antiepileptic medicines should be a priority. Countries are encouraged to undertake public awareness activities to reduce misconceptions about epilepsy and encourage more people to seek treatment. The research capacity of low- and middle-income countries should be built through expanded academic collaboration and establishment of centres of excellence.

The resolution calls on the WHO Secretariat to continue to lead and coordinate support to Member States in addressing the global burden of epilepsy so that people with epilepsy can receive timely treatment and can benefit from educational and occupational opportunities, free from stigma and discrimination.

On 26th February 2015 there was a debate in Parliament on epilepsy. A three-hour slot was scheduled for the Backbench debate, representing an enormous opportunity to raise the profile of epilepsy issues and to improve provision. The report of the proceedings in which Laura Sandys then MP for Thanet South took a major part are available here

Kent Police are warning the public to beware of distraction theft where one person pretends to need help whilst another steals property see

 Medical Exemption Certificates

A new system governing these certificates was introduced in 2002. Under the new system, people with long-term conditions are still entitled to collect their prescriptions free of charge.To apply for a Medical exemption certificate ask your doctor for an FP92A form. Your GP, hospital or service doctor will sign the form to confirm that your statement is correct. At your GP's discretion, a member of the practice who has access to your medical records can also sign the form.Your certificate will be valid from one month before the date that the NHS Business Authrority receives the application form.The Medical Exemption certificate  lasts for five years and then needs to be renewed. You may receive a reminder that your certificate needs to be renewed. If you don't receive a reminder, it is your responsibility to ensure that it is renew 

 The Britsh Medical Journal has published a report by eminent Epileptologists including John S. Duncan into Epilepsy Surgery. To read it click here

Changes to special educational needs system began  On 1 September a new law came into place in England (The Children and Families Act), which means the way children and young people with special educational needs (SEN)receive support has changed. The changes include replacing the statement of special educational needs with an Education,Health and Care plan, and SEN support for children in mainstream school instead of school action/action plus Visit Contact a Family  education pages for detailed information about these changes, including a series of factsheets they have  developed to help on  Facebook. They can help on any aspect of your child's education and advisers are available from Monday-Friday, 9.30am-5.00 pm to answer your query. 

The government is funding a two year programme to provide additional support to young people and parents during the implementation of the SEND reforms. Independent Support is an additional service that will work with, and complement the role of the Information, Advice and Support Service.

 In Kent the Independent Support Service is provided by the Kent Disabled Children’s ParentDriven Consortium with M4S acting as the lead agency.

 An independent supporter can help parents of children and young people aged 0-25 and young people themselves aged 16-25. They will work directly with young people and the parents of children being assessed for an EHC plan, this will include:

 Parents/young people going through the assessment process for the first time
 Children with a statement converting to an EHC plan
 Young people with an LDA converting to a plan
To find out more call 0300 011 0151 

Epilepsy Medication and Pregnancy

Dr Rosemary Leonard asks if GPs are failing to warn their pregnant patients about the risks of one of the UK's most widely-used epileptic drugs oncern is growing that mothers-to-be are not aware enough of the dangers of an epilepsy drug known to cause severe abnormalities in feotuses.Sodium valproate has long been known to increase babies' risk of cleft palate and spina bifida.Now new research has revealed some babies exposed to the drug also have mental problems and a survey found 25% of mothers were unaware of the risks.The drug's manufacturers insist they have always warned of the dangers.For full information on Pregnancy for people with epilepsy ask us for theleaflet or visit  the Epilepsy Society website

Keep up to date @Epilepsyhere on Twitter