Friday, 11 July 2014

#PTSD, #Isolation and #Support

There are times when we need support when it's either not available because we're not in the appropriate support pipeline or because there's no one living nearby in our limited social circles.  So what do we do?

By support needs I mean day-to-day tasks that we might need help with - eg cooking or doing something tricky in the realms of 'permitted work' where we need some guidance or a sounding board before going ahead on a certain idea or piece of work.

This support is essential to people living with chronic PTSD or any long lasting disability.

The problem is trying to find people that understand you, your disability, the task that your trying to achieve and have the time and patience to support you.  I'm lucky in that I have two people in my life that will do this for me - whether it's checking over a piece of work, a web page or a document for errors or for a reassuring voice to ensure that I'm cooking safely and turning off all my appliances afterwards.

There are also times when I may need to speak to someone and either of my friends may be unavailable and I have to rely on an organisation to help me with telephone support.

All of these avenues of communication are possible through the telephone.  You just have to make sure that you pick the right company with the right package for you.  Mine allows me to call any UK phone number for free, any time of the day.  I bought a little oven timer bell to make sure I don't go over an hour, as most companies only give you an hour free - then you have to redial the number to continue the conversation.  If you don't want a landline, there are mobile service providers that will offer you a very good package that includes free calls to any UK landline or mobile number and including free data too.  You might be able to get a good deal from these links:  http://consumers.ofcom.org.uk/tv-radio/price-comparison/or http://www.uswitch.com/broadband/compare/home_phone_and_landline/ - or you can find your own links by seaching 'Google' for 'uk mobile phone call packages' or something similar.

Here are some phone numbers for support, some of them for civilians, some for Veterans and others for both.  I haven't personally used some of these organisations but feel free to share if you have had a bad experience with them.  If you’re having a bad episode or need help urgently, you may find help right now with some of the agencies below:

Support numbers
Childline runs a helpline for children and young
people in the UK. Calls are free and the number will
not show up on your phone bill. Tel 0800 1111

Domestic Violence Helpline
 If you find yourself in an emergency situation, for example, if you
are being subjected to physical violence, always call 999.
For confidential advice support and information, ring the
National helpline on 0808 200 0247.


Mind - a UK mental health charity
Lines are open 9am - 6pm, Monday - Friday
Tel 0300 123 3393, Email info@mind.org.uk
or Text: 86463
http://www.mind.org.uk/information-support/a-z-mental-health/

Samaritans operate a 24-hour service available every day of
the year.  Tel 08457 90 90 90, or email jo@samaritans.org.


Ex Armed Forces specific support
Veterans UK (0808 1914 2 18) provides free advice on many
topics to all veterans and their families.  When the Veterans UK
helpline is closed callers can opt to be routed to the
Combat Stress or The Samaritans 24hrs help lines (UK only).

Combat Stress is a UK Veterans' mental health charity.
Helpline 0800 138 1619
General enquiries 01372 587 000
Email contactus@combatstress.org.uk.

SSAFA Forcesline provide confidential telephone support on a
range of services, including financial support and emotional
support. Tel 0800 731 4880.  AWOL Helpline 01380 738137.

The Royal British Legion can help you with representation as well
as some financial assitance.  They also offer a free handy person
service for those unable to do small DIY jobs in the home.
Telephone 0808 802 8080 - 8am to 8pm, 7 days a week.

I know it can be hard to get from day-to-day and not many people will be able to empathise with you or understand you ... but I hope you find some support from the options above.  Alternatively, you can go to www.lwptsd.com for a larger list of support organisations.

Regards

Villayat 'Wolf' Sunkmanitu



Saturday, 5 July 2014

Activity report re Nottinghamshire Veterans and Families Partnership (NV&FP) and 'Living with PTSD'.

After having served on the NV&FP since October 2013, I came to the conclusion that most of the collective don't know what networking and social policy work is.  They mistakenly assume that client referral is networking, when it is in fact a small part of the activity. 

I couldn't justify the time effort and stress of their inactivity and lack of cohesive thinking any longer and left the group this month.

It is clear that the main purpose of the group is to seek funding.

My report about the issues is below; this document will form part of my activity report from the project to Arts Council England:


Activity Report to Arts Council England  & NottinghamshireVeterans & Families Partnership

‘Living with Post Traumatic Stress Disorder’ (LWPTSD) and ‘Intimacy with Plants’ (IWP) are part of a rolling programme of exhibitions with the following aims:



  • To raise awareness of Post Traumatic Stress Disorder (PTSD),
  • Educate on Intellectual Property issues and
  • Promote creative arts as a coping mechanism for disability.



One of the project activities was to engage in dialogue with mental health professionals to raise awareness of the barriers that Veterans face with regards to access to service/support provision.



The exhibitions started on 5 November 2013 and are still scheduled to appear at more venues – with the first 2015 booking having just been confirmed.



I was invited to speak at the Nottinghamshire Veterans and Families Partnership in October 2013 to raise awareness of issues that Veterans face when seeking support, as well as to provide feedback on NHS mental health service provision based upon my experiences of being a patient in the Nottinghamshire area. 



I raised awareness of a formal complaint that I had taken out against one of the adult mental health teams and the implication of their less than professional behaviour. I shared my experience of attending ‘Combat Stress’ treatment.  I shared my daily experience of living with PTSD.



The group invited me to become a member of the NV&FP.



I was a member of this group for 9 months and feel my time and energy is best spent working on my own project now.

The reasons are as follows:

  • The group (NV&FP) takes much too long to complete simple tasks (over 3 years to come up with a webpage and logo, no moving forward on group strategies associated with client care).



  • The group does not adhere to its Terms of Reference by virtue of its general lack of action.



  • The most important action of such a group – networking and sharing information was taken off the main agenda and became an after meeting activity – losing effectiveness as most of the people attending the meeting would have left by this stage.
  • Seeking funding is, in my opinion, the over riding objective of this group.



The group is saturated with NHS staff from a team that is already supposedly stretched.  As a former community service manager, I find this irresponsible when I hear senior executives complain about dwindling funding and no guarantees of posts being funded in the next fiscal year.  I would suggest a more responsible use of staff deployment and time management.  Issues should be discussed at their own team meetings with the briefed attending member relaying the team views and reporting back on the group’s work.  There is also another issue with regards to numbers of NHS staff – if there was ever a contentious issue that had to be voted upon, the vote could be swayed in favour of the requirements or result sought by the NHS which might not necessarily be for the benefit of its service users and would, to say the least, be undemocratic.



I ran the NV&FP Action Group’s first meeting and facilitated a group discussion about the aims of the action group – which was only attended by 6 people out of a possible 60 people.  This group was to actually achieve tasks that the main group seemed unable to act upon.  Although different words were used, the activity role of the group is identical to that of the main group which begs the question - if the action group are to do all the work and operate with the same terms of reference … what is the main group there for?  What is its role?  What are the participant groups there to achieve?  I strongly suggest that the NV&FP go back to being one group and start working on a wider range of issues together as per their terms of reference.



In terms of networking and Social Policy work, ‘Living with PTSD’ has achieved far more on its own than working with the NV&FP.  I can’t justify the time, the additional stress, frustration and anger generated through working with an ineffective collective.  Only 3 of the groups in the collective actively engaged in some form of networking with my project that has actually benefited people suffering with PTSD.  I have liaised with Mayors and Councillors in the areas where the exhibitions have taken place to raise awareness of the issues raised and to find out what more can and is being done to help Veterans and other people living with PTSD.  The response from officials towards the project has been positive to date.  Their feedback needs to be further researched and the results will appear on www.lwptsd.org.uk.  Combat Stress and Help for Heroes continually promised to support this project but failed to do so.

I joined the group to raise awareness of issues from a disabled veteran’s perspective and to network with the group which I have done by setting up a relevant website and sharing the details of the other groups that can provide support to Veterans and their families and through relaying personal experience.  I listened to comments that were being voiced on various issues by the NV&FP and provided solutions and support where possible through the sharing of information via www.lwptsd.org.uk.  I will continue to list your individual groups on my site as sources of support.



I wanted this group to help bring about changes and improvement in these specific areas:



  1. To ensure that NHS patients transferring into their geographical area of care with up-to-date medical reports (less than 3 months old) are not re-diagnosed or re-assessed.  Instead they should be referred to a practitioner for continued care as soon as practicably possible.  It should be the responsibility of their practitioner to assess their needs and take appropriate action.  The NHS can’t continually complain about a lack of resources and then waste staff hours carrying out duplicate assessments for transferring patients.  You’re all NHS staff and you’re qualified to the same governing bodies when it comes to role dependent mental health related care.
  2. That NHS professionals had a document providing a ‘good practice’ guide relevant to Veterans with PTSD.
  3. To ensure that NHS management representatives from the other mental health teams in the area are a part of this group as they have Veterans referred to them directly from GPs.
  4. To continually raise awareness of Veterans’ issues and service provision options to GPs.  The feedback is that the majority of GPs that are in touch with Veterans are unaware of the routes of support available to them and that some don’t care or aren’t interested in mental issues and will issue a prescription rather than take the time to identify a route towards recovery or coping with the condition with the patient’s understanding and agreement.
  5. To provide other avenues of direct NHS led care and treatment not just relying on CBT and EMDR.  People are different and they have different needs.  The mental health profession is relying too heavily upon these forms of treatment, along with pharmacology.  The road back from pharmacology can be extremely difficult and for many, impossible, once a person’s brain chemistry has been altered for a prolonged period of time.  One of the oldest forms of treatment for someone with a mental health problem is to be able to sit somewhere with someone they can trust and to be heard without being judged.  The NHS don’t generally encourage this form of treatment as it negatively impacts on statistics and funding issues.

  1. The provision of a holistic source of referral for different treatments/service providers (statutory, voluntary and private) that can assist people with PTSD, as well as general information exchange and networking, particularly via the web and social media … and the library service as a means of assistance for non-IT literate people seeking help with PTSD.
  2. The recognition that for many ‘recovery’ isn’t possible and that the best case scenario is ‘Living with PTSD’ and understanding that to care for yourself requires a lot of time and energy.



  1. Where a complaint is made against a statutory service and is proved or accepted, that the issue(s) are then addressed with the practitioner/service representative responsible rather than being swept under the rug by the service manager.  Inappropriate and unprofessional behaviour can have dire consequences for people that are vulnerable owing to mental health problems … this can and sometimes does end with the loss of human life, whether through suicide or other actions.  As a service provider, you have a responsibility to try to ensure that this never happens.





I request that the group actually work on the issues listed above, rather than just seeking funding.  The foundation needs to be solid before you build further services upon it.
Feedback from people living with PTSD that I have spoken to at the various exhibition/workshop venues in Derbyshire, Leicestershire and Nottinghamshire suggests that there is still a lot of ignorance from statutory agency employees about PTSD and how to treat or communicate effectively with suffers without triggering their condition.  Statutory agencies were identified as the Ambulance Service, Police Service, Social Services, GPs, psychotherapists, psychiatrists and NHS service managers.  When it comes to highly motivated veterans with the ability to do physical harm to people, the implications of triggering their condition can be dire.  People that are responsible for the provision of care to these people need to be aware of this and take responsibility for their own actions and behaviour when dealing with people with mental health problems … especially Veterans.

My thanks to those of you have that have networked with me and to those of you that actively work with Veterans and other people with PTSD in a responsible and caring way.  I hope that you are the majority in the equation. 



If any service/organisation/community group would like to have a presentation or discussion about the issues raised with a view to improving services for people living with PTSD, or to understand what it feels like to live with PTSD, please get in touch.
Villayat ‘Wolf’ Sunkmanitu

Wolf Photography

Email wolf (at) wolf-photography.com

There was a bit of discussion around points 1,2 & 8.  Some parts of this discussion were addressed by a document produced by myself and 2 members of the NHS.  Members of the group dismissed the aims of the document on the basis of there being no evidence to support the necessity for a change in policy.  The group's chair stated that the NV&FP was not the body to further this issue to the NHS hierarchy.

I disagree.  I also believe that you don't need evidence by way of complaints to plug a hole in policy and practice when an issue has been raised.  The role of a good manager is to look to continually improve upon existing services and to maximise their effectiveness ... particularly when dealing with vulnerable people in our societies.

Please feel free to share this post and to add your thoughts.

Villayat 'Wolf' Sunkmanitu.

Council Tax reductions for people with mental and/or physical disabilities (England & Wales only)

There are two forms of discount available for disabled people:

Disabled band reduction scheme

This scheme makes sure disabled people don’t pay more Council Tax if they need:
  • a bigger property
  • to adapt their home because of their disability
The property must be the main home of at least 1 disabled person. They can be an adult or a child and don’t have to be responsible for paying the Council Tax.
The property must have 1 or more of:
  • an extra bathroom, kitchen or other room for the disabled person
  • extra space inside the property for using a wheelchair

Other Council Tax reductions

People who are severely mentally impaired and some live-in carers are exempt when working out Council Tax.  Some people living with Post Traumatic Stress Disorder will qualify under the 'Severe Mental Impairment' exemption - please be aware that this isn't restricted to people with learning difficulties etc.

 To find out if you qualify, please contact your local Council Tax office via the link below, tell the officers about your circumstances and ask them if you qualify.  People living in Scotland may be entitled to an equivalent scheme - please check with your Local Authority.


https://www.gov.uk/apply-for-council-tax-discount

Good luck with your application.

Villayat 'Wolf' Sunkmanitu