On 1st July 2018, the Tinnitus E-Programme became a therapist-led course of Tinnitus Management following 9 years of being self-directed.
The decision has been made as a result of a 6 month pilot project running a Therapist-Support Opt-in. Thank you to all for participating in this project - without you, the 'new' Therapist-Led Tinnitus E-Programme would not have been possible.
A potted history of the Tinnitus E-Programme:
- 2009 Tinnitus E-Programme was launched online
- 2016 Independent Evaluation by NIHR NHBRC completed
- 2017 (July) New TEP website including THI submission and registration by all Users
- 2017 Opt-in paid (£60.00) for TEP Therapist-Support pilot
- 2018 Tinnitus E-Programme change from self-directed (self-help) to Therapist-Led
What Has Been Learned to Inform the Decision to Make the TEP Therapist-Led?
- 92% of self-directed users have not progressed beyond Module 2 of 5 modules
- 100% of users who made use of therapist-support completed all 5 modules AND reduced their THI distress score by either 1, 2 or 3 categories. Much depends on how high the THI tinnitus distress score is to begin with – the highest THI scores were 98%
- 15% of those opting for therapist-support were unable to make use of the support because of either a) Long term illness/poor health or b) Undisclosed reason
The above lack of engagement (92%) for self-directed users is in-keeping with similar findings in the published research into efficacy of health-related online self-help strategies, although 92% is particularly high. A major factor for this is likely to be that 52% of the self-directed users of the TEP score in the severe (56%+) THI categories making the Tinnitus E-Programme as a stand-alone online self-help intervention unsuitable
The 5% attrition of those opting for but not making use of online therapist-support is also reflected in the published research
As a result of the above evidence, the Tinnitus E-Programme has been made a Therapist-Led online course of Tinnitus Management from 1 July 2018
How Can We Make This Happen and Ensure the Therapist-Led Tinnitus E-Programme Is Sustainable?
1. The Tinnitus E-Programme, even during its 9 years of being self-directed was referred to as being “free”.
It isn’t and never was free!
I have spent the past 9 years making the TEP work as an online accessible course of Tinnitus Management and additionally hundreds of hours over the past year since July 2017 to move the TEP on to where it is now.
The researchers at NIHR NHBRC (National Institute for Health Research, Nottingham Biomedical Research Centre) also gave hundreds of hours to its independent evaluation – NHBRC funded the research. The Tinnitus E-Programme website has always called itself “A free to access course of Tinnitus Management” – this does not mean the same as “free”.
2. So, funding is needed – be that me giving my time and my time being at least partially funded. From 1 July 2018, every TEP registrant is allocated 2 hours of Therapist contact, that includes up to 2 online video calls using the Zoom platform plus email support. This is currently costed at £60.00 per User - the actual therapy time I am making available per User is in excess of £240.00. This does not include costing all the hours it takes to administer the website, research for content, writing content, maintain records etc.
Funding to sustain a Therapist-Led Tinnitus E-Programme for all English-speaking TEP Users is currently planned as follows:
3. As a TEP User, there is a TEP User Subscriber category available, via PayPal, where a TEP User subscribes to a monthly payment of £15, £20 or £25 depending on what s/he can afford. Length of subscription is capped at 12 months although subscribers can Unsubscribe at any time
By becoming a TEP User Subscriber, as well as helping yourself, any amount over an accumulated £60.00 will go towards helping others who need help with their tinnitus and find themselves in financial difficulty, unable to subscribe or donate. Or,
4. You can simply donate £60.00 - a one-off payment via PayPal. This is called the TEP Supporter category. Or,
5. You may wish to donate an amount of your choosing using the Donate PayPal button – this is called a Tinnitus E-Programme Donation
6. There is an additional category of TEP Investor Donor whereby contributions are donated to support the Tinnitus E-Programme. Past TEP Users and those with an interest in improving access to Tinnitus Management can become a TEP Investor Donor
Moneys donated in this category are to be used as follows according to each TEP Investor Donor’s preference:
a) To pay towards therapist support for X number of TEP Users unable to donate themselves. Where this is the case, the Investor Donor will be advised of the Outcomes (THI and other tinnitus distress measures) before and at the end of the Tinnitus E-Programme for each person they have helped. Anonymity of individuals (TEP User and the Investor Donor), will be maintained always.
b) The Investor Donor can choose if they want their donations to help country-specific Users or Users from any country
c) Investor Donors can also choose their preference of whether their donation should be wholly spent on TEP Users’ therapist contact, or whether a percentage can go towards training of additional therapists as the need for this support grows, and/or further website development. This will be agreed individually with each TEP Investor Donor
All Investor Donor’s choices will be respected.
TEP Users Unable to Subscribe or be a TEP Supporter or Donor through Financial Difficulty
7. Financial difficulty does not exempt anyone from being a TEP User. Everyone can access as a TEP User, provided they are English speaking and there is therapist capacity available. When/if, at a later point in time, the TEP User can contribute financially, they will be helping someone else
How Much Time Does Running the Tinnitus E-Programme Take?
Pre-Therapist-Led up to 30 June 2018, I spent on average 12+ hours per week on the Tinnitus E-Programme - often many hours longer when the IT (website function) decides to break! Although I am wholly responsible for building and maintaining the Tinnitus E-Programme website to date, I am no expert in website design! It would be great to hand it over to an expert at some point!
Note: The 12+ hours do not include on average a further 8 hours a week working 1-1 online with individuals who need help additional to the TEP, working through a process using CBT (Cognitive Behavioural Therapy) for Tinnitus and helping by emails between their 1-1 sessions. A separate mechanism for funding this development is in process through The Tinnitus Community Interest Company
Post-Therapist-Led from 1 July 2018, it will be a great deal more than 12 hours per week! For this reason, I will be rolling out training to appropriately qualified individuals who can also provide one to one TEP Therapist contact. They will still have me to fall back on for clinical supervision when they need it, or indeed can refer TEP Users they consider need to see me.
I believe there will be a role for Volunteer Past TEP Users to also be involved – but this is for the future.
Is TEP Therapist Contact Obligatory?
TEP Therapist contact is not obligatory but working self-directed is NOT RECOMMENDED due to the reasons outlined in “What has been learned to inform the decision to make the TEP therapist-led?” above on page 1 and the ever-growing evidence in the research in to online self-help. Should anyone wish to use the TEP self-directed, they can, but they will still need to complete the Progress Checks after each module to gain access to the next module
I realise this has been quite a long read; however, I consider it necessary to be as open and transparent as possible about the changes being made to the Tinnitus E-Programme.
I wish you every success if you are embarking on the Tinnitus E-Programme – The Pathway to Managing Your Tinnitus!
Debbie Featherstone MSc
Hearing Therapist & Psychotherapist
Founder of the Tinnitus E-Programme 2009-2018