PULS Diary

comprehensive diary of events (my own notes for anyone to read)



The PULS idea was conceived


A prototype was manufactured by, Demand.


My physiotherapist, as well as occupational therapist, saw immediate advantages to my device as did my GP. My physiotherapist could immediately think of several patients who could benefit and encouraged me to take this invention further.

My GP suggested that I should incorporate some sort of carry strap and idea that I will bear in mind at a later date.


My occupational therapist, while willing to endorse the use of the PULS, cautioned 'You probably also need to spell out that it is not intended for people with severe pressure care problems, as potentially on a long car journey it may cause a friction burn. The person should check for pressure areas every hour on first use, and stop using it if any pressure points occur .

Soon after receiving the prototype I met someone who owned a mobility retail outlet and she also thought that this was good invention and with her help we should start moving forward on a Marketing Proposal for the PULS. When she suggested I sign over my rights to her I realized the full potential of the PULS and took it over to develop it for myself, not for financial gain but to ensure that other people are also able to use and benefit from it. Even if I do not get any financial gain I will still be thankful as at least I will have been successful in helping others.

As I believe many people with neurological conditions such as stroke and multiple sclerosis (MS), Muscular Dystrophy, Cerebral Palsy, Leg Lymphedia, Hip replacement, etc. could benefit from the device, I thought that I should bring it to the attention of the National Health Services (NHS) or take it to a manufacturing stage. I felt there was a possibility that I could patent it so my first challenge was to ask the CEO not to publish details in their annual review so that the PULS would not be widely known in the public domain. My next step was to approach Imperial Innovations Ltd, but they eventually informed me that they primarily support inventions generated from the Imperial College in London and do not have the resources to take on external inventions. I then looked on the NHS Imperial College Healthcare Research site which states in the opening paragraph:-

'Do you have an idea or invention that could help improve patient care? Imperial College Healthcare NHS Trust can help ensure that the benefits of your innovation remain within the NHS instead of being exploited by the commercial sector'.

The contact person given is a Richard Abbott but when I tried to contact him my emails remained unanswered and when I eventually phoned him on the number provided I was in formed that he no longer works for the NHS but would still possibly look at my idea in his retired capacity but I did not even get a reply! A long battle then began at times going around in circles. being sent from pillar to post.. Everyone that has seen the PULS say it is an excellent idea so in the Lord's strength I WILL persevere on. My next step was to get hold of someone from the NHS Research Design Services (RDS). Although at first being extremely interested in seeing the PULS and even suggesting that they would like to see the device in an email dated 15 May 2012 undertaking that they would get back to me. That never happened! So much for the red statement above on the NHS website! With a lot of perseverance, I eventually discovered that the NHS RDS held drop in sessions at the Biomedical Research Centre at Guy's tower at Guy's hospital every Thursday afternoon. I could go and physically show the PULS to one of the research advisors along with a motivational report and hopefully get their approval and take the idea forward. I was then informed that as I resided in St. Albans I needed to contact the University of Hertfordshire who again after my initial approach showed a lot of interest and with many promises of getting back to me to arrange to see the PULS but again failed to do so.


Much has happened this year as I felt it time to really vigorously pursue this project and take the bull by the horns.

Mar My friend Peter Lagden and I went on a 3 hour journey to Guy's hospital to find out if RDS really existed, On arrival, we found their drop in sessions had changed to another day. We did however get the date of their next drop in session and also contact information so our trip wasn't wasted and besides we had a good day out. In trying to establish the exact location of these drop in sessions, I was again informed by the same person I had dealt with in 2012 that as I resided in St. Albans I need to go via RDS East of England who again kept promising me that someone would get back to me 'to explore my options'. This time I have started to be taken seriously as I later received notification that a 2 day workshop on the topic of, 'applying for National Institute for Health Research (NIHR) Funds for Research in Healthcare’ will be taking place in Cambridge in June at a cost of £50.00. This in my present circumstances I could not afford so enquired if this fee could be waived and was then advised that I was able to attend at no charge and registration forms were sent out to me. My next challenge was to finding a way to getting to Cambridge in time. As both the workshops start at 10.00 am I realized that public transport would be out of question as it would mean me leaving early and getting home late. Someone suggested I email my church family to see if anyone knew of a way to getting there. Several people replied, some even offering to especially take me there. I was offered a lift on both days by someone who actually works in Cambridge. God is good and provides for all our needs if it is His will!

Since my stroke, I have not been able to concentrate for very long so I asked members of my church to pray for me so that I could concentrate for the full day whilst on this workshop, enabling me to get the full benefit of the subject matter covered. The workshops were held on the 19 & 26 June and I was able to concentrate most of the day, learning an incredible amount on the ways to apply for NHS funding. I was also able to network with a few people including a consultant paediatric neurologist who showed interest in the PULS especially for the use by children.

June I must confess I do not really understand it all at this stage so have contacted the Stroke Association hoping that they can come alongside me to guide me through the complicated process and help me with the paperwork.

June Someone from my church is a physiotherapist and thinks I have a great product and has offered to put me in touch with a neuro-physiotherapist and also with the Chartered Society of Physiotherapy's Frontline magazine. This magazine goes out bi-weekly to all physiotherapists country wide.

July I feel that things have at last started to move forward. At the final question time at the Cambridge workshop on 25 June I strongly voiced my opinion that although the NHS openly welcome innovative ideas from the public and especially from their user group (patients) the reality is that this is extremely challenging and frustrating.

July An assistant research advisor taking the questions had indeed followed up my statement and advised me that I would need a clinical partner in order to proceed. Now where on earth am I going to get a clinical partner from considering that I have little knowledge from the medical field and certainly no contacts nor any resources? I am merely a stroke survivor and victor who is trying to help other stroke victims.

July I was contacted by a professor and director of the NIHR RDS for the East of England who gave me the contact details of a NeuroRehabilitation Manager and researcher at the Princess of Wales Hospital, Ely, Cambridgeshire

July Email sent to this PhD MCSP person but having been made aware that he is extremely busy for the month of July so will need to wait until August for further developments with the NHS.

July It appears from what a neuro-physiotherapist told my friend that the PULS has more benefits that I even I was aware of and I quote what she has written for a proposed article in the Frontline magazine: 'A neuro-physiotherapist has given her feedback having said that she has not come across such a product in her 30 years of being in practice and she could see the benefits to many patients with neurological conditions. The benefits would be from a clinical point of view (proprioception, correct joint alignment etc) rather than just the practical view point of the patient'. I had no idea that the PULS could benefit other people in this way as I have little medical knowledge which shows that the idea was in reality inspired by our Maker and that I was chosen to bring it to the attention of mankind.

July A research communication project officer from the Stroke Association phoned enquiring as what assistance I required and suggested that I would first need ethical approval from the NHS. She said that she would soon be leaving the Stroke Association but promised to try her best to find me a suitable person before she leaves.

July Another 5 workshops on, 'patient and public involvement' have been offered to me. These are to be held in Cambridge on 12 & 28 Sep, 8 & 24 Oct and 7 Nov. Depending on me getting there I think it would be beneficial for me to attend all 5 workshops.

August Having seen a more comprehensive introduction including photographs of the device and its usage, a neuro-physiotherapist has given her feedback and said that she has not yet come across such a simple product in her 30 years of being in practice and she could see the benefits to many patients with neurological conditions.  'The benefits would be from a clinical point of view (proprioception, correct joint alignment etc) rather than just the practical view point of the patient.'

August I was emailed by the same research communication project officer from the Stroke Association and been given some extremely helpful advice and web links to pertinent sites including a possible funding source of their project grant of up to £210,000. The deadline for applications is 7th February

August As the PULS has not yet been formally trailed and does not yet have an evidence base Frontline magazine will not yet be able to publish an article.

Sep I attended the first the workshops and learnt a great deal about randomised control trials (RCT) and it seems that this will be one of the steps I will need to follow. I also learnt the meaning of the word placebo

Sep I still have to hear from the NeuroRehabilitation Manager and researcher at the Princess of Wales Hospital. I was informed that he would be busy throughout July. I emailed him on the of 5th July.

Sep As I had not heard from the researcher at the Princess of Wales hospital I again contacted the professor and director of the NIHR RDS for the East of England who gave me his contact details in the first place and her reply was that she definitely felt that this researcher would be the right clinical partner for the PULS and promised to give him a nudge.

28 Sep I attended a workshop at which I learnt about qualitative and quantitative research and also a possible step in the research path which could proceed a RCT and this step is called feasibility study which I now think that I need first do. I also became aware of the possible formation of a focus group which could be useful in the promotion of the PULS

Oct I had a good discussion with someone at my church who is very experienced in business matters in order to establish a way forward in the event that no one in the NHS took any interest. I was advised to publish pictures of the PULS on this site and to open up the possibility of having a private company's interest. I also learnt that as I have already used the PULS openly in public technical it is already visible on the public domain and so no one will be able to patent it. I was about to put a pictures on here but I should have trusted the Lord a little more as that same evening I received a very positive email from a Chartered Physiotherapist and Director of Research at the Oliver Zangwill Centre for Neuropsychological Rehabilitation Princess of Wales Hospital in Ely, Cambridgeshire who thinks that he is able to help me so next I need do is agree on a date and time for a Skype discussion. Once these discussion has taken place I may consider putting pictures on the web.

8 Oct I attended a workshop on ethical research and learnt of the existence of the Declaration of Helsinki. At first I had no means of getting to Cambridge but a few days previously a kind person from my church offered to take me up while she spent her day visiting a local historical trust site.

Oct Pictures were added at the top of this page

Oct A telephonic discussion with the Chartered Physiotherapist mentioned in the 6 October paragraph took place. He was extremely interested and suggested we approach Health Enterprise East to see if we could get any advice from them and sent an email immediately saying 'I think this is a good idea, low risk and there are some interesting claims here that deserve investigation.' He also recommended that HEE brought the PULS to the attention of the catalogue/equipment supplier 'Aids for Daily Living'.

We can give thanks to God for opening doors for the PULS and ask Him for continued blessing on the project as it has now taken on fresh momentum.

Oct I heard from Health Enterprise East but they are unable to help me

unfortunately we are not in a position to be able to help you protect this idea. We have 2 main business functions: to provide innovation protection and development support to our NHS Trusts when their staff have new ideas for products and secondly we provide a consultancy service to SMEs and companies wishing to engage NHS clinicians and Trusts with their product development, but this is on a fee-for-service basis. If you would like to discuss these latter services in relation to your innovation, please do let us know.

I can see now see how innovators are slowly being worn out by the NHS and their subsidiaries who say and promise one thing but actually do little to offer actual support.

24 Oct I attended another workshop in Cambridge. The topics covered were: the measuring of well being. Also Mymop, Healthcare rationing, QALY and cohort studies

7 Nov At the final workshop I first heard of quota sampling

Nov It was suggested that I should try to get the PULS made available from NRS Aids for Daily Living so I have begun making enquiries as to how to proceed along this path.

Dec I have heard from NRS and they feel that the PULS represents too much commercial risk at this stage but may be interested once it has been clinically proven.

Dec Enquiries to other disability suppliers have been made: Paterson medical, Had and OT Health Care Equipment

Dec The chartered Physiotherapist and Director of Research at the Princes of Wales hospital in Ely and who is supportive of the PULS attended the 2013 UK stroke forum and has hopefully promoted the PULS to fellow delegates

Dec Although I have not as yet heard anything from any possible suppliers I see that Had in Welwyn Garden city have looked at this page on 3 December and also Patterson companies in the United States on 6 December Being so close to the Christmas holiday period I could possibly hear from them in the new year?

Dec I do understand that the NHS presently has to carefully scrutinize its spending and in spite of what they still say on the Imperial College Healthcare Research website (take note of the NHS involvement of this web site) I have made little headway

'Do you have an idea or invention that could help improve patient care? Imperial College Healthcare NHS Trust can help ensure that the benefits of your innovation remain within the NHS instead of being exploited by the commercial sector.'

I think that after 4 years of pursuing this avenue by giving the NHS the first chance of taking the PULS forward they should remove this opening statement from their website and I will continue to pursue the promotion of the PULS investigating alternative avenues as I still have to come across someone who thinks that the PULS is not a good idea so will wait to see what the disability suppliers say and hopefully take the idea to the commercial sector but meanwhile still continue to try to obtain clinical approval.

As I feel that as there seems to be only one precautionary factor which has been pointed out by my Occupational Therapist on 27June 2012 is see little reason for any formal lengthy medical research is undertaken the PULS could be be used and from all the positive observations and comments the PULS has had could only benefit the potential user's musculoskeletal system and nothing would be lost by its use.

Dec The next step, I feel is to find a manufacturer and get costing from them for a varying range of quantities as it is obvious that the economies of scale will apply. Once I have the costs I need to find a sponsor which could possibly be via the Stroke association's clinical trail grant.

Dec I have gone back to where this journey began and went back to Demand's website and now see that they also sell some products so will now investigate to see if they may be interested in stocking the PULS and what their criteria are. I will approach them in the new year.


Jan The way forward... I need to determine the exact costs involved in getting a few more units manufactured, then find a few volunteers who could make use of the PULS after which I will need to identify a sponsor to fund the additional units before I place an order to get these manufactured. I will also investigate the possibility of obtaining funding from the lottery fund and go forward from there...

Feb Nothing has moved since last year except for the fact I have emailed Demand but am still waiting to hear from them. Time has come for me to again pursue the PULS.

Feb Possible future steps that I have to bear in mind:

  1. Update an ongoing Gantt chart to plan the project. Ganttchart
  2. Identify clinical partners who could help me obtain ethical approval from the NHS.
  3. Identify someone to assist me in conducting a feasibility study or a randomised control trial.
  4. Identify a number of trail patients/ volunteers, the number as stipulated by the NHS.
  5. Could Demand quote on another bespoke model?
  6. Could Demand recover the existing prototype?
  7. Identify a professional to take accurate measurements of my prototype in order to get several bespoke trail PULS's made.
  8. Obtain funding for these trail PULS's.
  9. Manufacture of the trail PULS’s.
  10. Evaluation of trial results.
  11. Re-design of PULS to possibly incorporate improvements:
    1. Manufacturing them adjustable in a possible 3 main sizes, small, medium and large.
    2. Manufacturing a protective casing.
    3. Evaluating the type of material the final product is to be made from.
  12. Manufacture of the final version of the PULS.
  13. Distribution to client.

The above steps have not taken into account any funding so before the next step can be taken I will require the necessary financial resources and under the present economic conditions this will be challenging.

To follow my envisaged steps I will need to gather a team of specialists or partners as I only have limited experience in many of these disciplines. The team would possibly consist of the following professionals

  1. Project coordinator, a role which I feel I could manage.
  2. Webmaster to create a professional website.
  3. Neuro-physiotherapist.
  4. Financial advisor.
  5. Book keeper or accountant.
  6. Legal advisor.

This whole process is in the hands of our Lord and His timing is impeccable and if it is His Will, He will allow doors of opportunity to be opened. I however still need to do my part to bring this project forward to the best of my ability.

After talking about to a doctor at a recently opened upper limb neurorehab service based at the University College London Hospital I feel it is again time to promote the PULS. I think that I now need to follow the steps:

  1. approach Demand and ask them to replace the foam padding which has been torn in places.
  2. Determine the material that the prototype PULS is made from.
  3. Identify several volunteers who think that the PULS could benefit them.
  4. Find a sponsor to finance the manufacture of bespoke units for these for the volunteers.
  5. Give them out at a nominal charge or possibly FREE to these volunteers with an undertaking that they will use it as often as possible
  6. Also an undertaking for these volunteers to email me a monthly report to see if there have been any problems and to report on their improvement

Meanwhile I have had daily use of the PULS and it has benefited my healing greatly over the past 4 years. I have now gained enough muscle strength and control in my weakened leg that if I concentrate, I am able to keep my leg in its correct position for much of the day and generally only use the PULS when I am sitting in front of my computer. As far as I am concerned, its purpose for me has been fulfilled but I would however still like to see other stroke survivors also benefit. It is such a pity that the NHS is so extremely evidence driven. For new drugs I would agree but for a simple idea as the PULS definitely not!

Early November I have contacted Demand and asked them to replace the foam padding which has become torn in places and also to quote on the cost of producing a few bespoke units but still not have a reply from them so obviously this door is closed so I need to move on.

Nov At a life after stroke award ceremony hosted by the Stroke Association I met someone who sits in on regional meetings of a stroke reference group and he showed interest in the PULS


Feb I have meet the person I met in November in my own home for him to see the PULS and we discussed possible ways forward so hopefully things will again move this year.

August I realized that as stroke effect people in different ways the PULS may not benefit all survivors so I will no longer pursue this with any vigor.

September I have invited several therapists and other people interested in strokes and neurological accidents to be connected to my LinkedIn profile and have had a fantastic response so I published a post with the hope that someone may come alongside me. So far I have had 25 visits to the page


4 Apr I have been encouraged to again pursue this idea by a very good friend from church who is a research MD.

4 Apr Sent an email to the person convening meetings of The Stroke Research Patients and Family Group established in 2005 to seek their opinion whether or not it is again worthwhile pursuing.

1 May I have been contacted via LinkedIn by the MD of a company in Tutbury, Staffordshire that deals with specialized orthotic services and she has asked a member of her staff to look at the PULS. This however turned into a scam as the person was eventually no longer found on LinkedIn


so far this year I continue to make more Linked In connections with Occupational Therapists, Physiotherapists, and anyone in the neurological medical field being invited.


I now have 1,166 connections and a average viewing of my profile of over 30 so it will only be a matter of time before someone in the field is interested in helping me get this project off the ground


I am still using the PULS at home on most days and appeal to you that if you know of anyone who could make use the PULS to and we may work out a way for us to get another.