Helen Spence

Helen Spence

I am an NHS Manager, currently Evidence and Engagement Manager at NEL CSU, supporting CCGs, STPs and Integrated Care Systems in London.
I am an evidence searcher but want to improve my PMO skills

Location North London


  • What resonates with me, is people experiencing care, influencing how that care is delivered. For me that is core.

  • Jo - I would love that! Funnily enough I think you may have interviewed me! It would indeed be a privilege.....

  • @KellyBainbridge I have EDS too, and the fact that it can be "invisible" and in some cases quite rare, makes things tricky

  • For me, the biggest issues will I think be balancing my own and families issues with supporting someone and ensuring good emotional boundaries.

  • I am never usually asked about my story and that of my family. When I am, it is hard to know where to start. I try, to have a central point - often my take on the difference between my own and my families experiences of physical health issues and mental health issues or the difference between experiencing something yourself or being a carer. I am trying to use...

  • I think it is, as others have commented, listening to someone and without judging, offering support. We don't have to know what someone is going through to help (though that might help) but giving our time is important. I get very anxious, so find CBT type approaches work well for me in considering things from a different perspective. I have also seen a...

  • Like many others here, I am very interested in peer leadership but also have questions about how this works in practice and how it is viewed by health services. I found my organisation was keen to have a disability staff network, but less keen to actually put in place the suggestions that we made.

  • As many people have already commented, personalised care is not rocket science. However, I believe that it is only once you experience not being supported to live in the way you want, that you understand how vital this is. As a child I was in hospital a lot. I probably missed more than half my primary schooling. I had home tutors, but this is not the same and...

  • Good personalised care allows people to live their lives as they choose. I really don't think the importance of that can be overstated. You only realise this when you have the experience of not being able to live life in the way you choose. Interesting to read the responses below about balancing demand/costs and quality. I do think we need a grown up debate in...

  • I have enjoyed learning using the stories and seeing the progress being made with personalised care. I am looking forward to finding out more about how I can become involved in peer leadership as I am finding this course very inspiring.

  • I think, as many people have said, it is about services listening and valuing the experiences of patients and their families. This needs appropriate staffing and resource, and I agree with those who question whether we have this.
    I also believe that as patients, we have to change our perception as well. For many years I saw the NHS as a service that would...

  • I think sharing stories is important, but I have found when I have done this it has got a range of reactions, not all positive.
    For staff not used to a manager, in a non-patient facing service, talking like this, the reaction can be a sense that it almost isn't professional to talk about a condition. I think there is a way to go in some areas to accept people...

  • I think culture is very variable. Some areas I think there has been progress and others, less so. I feel that social care, particularly services for elderly people is very much under funded, focused on money rather than the individual and also often ignores the input of carers and their needs. I know this is about the NHS, but with conditions like dementia, it...

  • Watching the video, I just can't get over that they told the social worker that they wanted to get married, and the response was "well, that is going to be difficult".
    Words fail me. In what world would non-disabled people (or anyone) be greeted with a comment like that if they wanted to get married. To me, it really highlights the importance of choice and...

  • Patience, so much patience. So many years of waiting has made me very patient but also determined and pragmatic. I have insight into living with a long term condition and this can help me understand the issues of others. I have also been a carer and understand how hidden from society their needs and issues are. I am also a good listener, which I think is an...

  • I am very interested in being a Peer Leader. Not sure if I have really done any co-production yet. I was part of a staff-led disability forum at my CSU. I think we worked hard to represent and raise the needs of disabled staff, but the response from most management was not great. We made progress, but not as much as we should have done.

  • In terms of employment, I have used the process where if you meet the essential job criteria and have a disability, you go through to interview. I think this is helpful, however, still very few disabled people in positions of seniority in NHS management. I find people have more positive attitudes now but still a lot depends on the attitude of your line...

  • That is shocking. Not surprised about non-declaration. When I first worked in the NHS, I would not have officially declared my disability. I do now but am also wary about potential negiative implications of this.

  • From my own point of view, we still have a long way to go on physical access. Although I work for the NHS, almost all of our building have long-standing access problems which improve slowly if at all. I have been involved in a staff forum looking to raise awareness about issues like these, but I think there isn't enough senior management awareness to really...

  • I am an NHS Manager considering a career move to a role that has involvement in lived-experience and personalised care in the NHS. I have several long term conditions, spent a lot of time in hospital and have also been carer for my parents who have memory loss. I want to understand more abotu this area of work and hopefully to use my knowledge of the NHS as an...

  • I feel I can talk form my own experience, as a patient and carer, about how important choice and personalisation is. I am less confident on how the strategy works in reality. How do people know about PHBs? What happens in CCG areas where money is short and access to services is frankly blocked or made very difficult.

  • My understanding of the theory and policy around personalisation and the excellent case studies showing the difference it makes to people's lives.

  • I have learned how things can and should work, enabling people to have choice and control in their lives. The reality is that there isn't always enough awareness of the personalisation agenda, and in some areas of care, there is frankly, no money. My Mum had mixed dementia and we had to pay for the support she needed privately as it was not provided by the...

  • I can see personal health budgets making a big difference where a person has very specific health needs, and the budget allows for the training and support of PAs to provide support that might otherwise have to happen in a healthcare setting.

  • Totally agree with you about people feeling threatened if you show your knowledge, even in decisions about your own care. It is very wearing

  • @JoanneClare I agree it is a real challenge to know about community support, and in the times of limited funding, for community organisations.

  • I was able to push for a referral to a specialist orthopaedic trust before surgery because of my complex and rare conditions. However, this was a real fight for me, and it seemed less about my right to choose and more about making a nuisance of myself until people started to listen. This should not have to be the case, but sadly it still is for so many people.

  • Yes, this has sadly been my experience too

  • This isn't always appropriate, but I have asked, on my onw behalf and as an advocate for others, "What would you do, if you were in my (or my relative's) position? It can be interesting to listen to the rationale of the health professional and it may throw up issues you may not have thought of.

  • Shared decision making - in my view, vital but needs sign up from all involved. I have had issues with my joints from birth. When I needed knee replacements in my forties, my GP delayed and stalled, saying I was too young. It was only when he finally viewed the x rays that I was able to be referred to a specialist trust for surgery. There, they understood my...

  • I think social prescribing, where aa wider range of support than purely medical can be offered, has a role to play in reducing inequalities. It can allow people to access financial advice, navigate services and give access to support for carers, who are often a neglected group.

  • I think for me, it is the shift to being seen as a whole person. As a child I had hip problems, and was very much seen as "the girl with the terrible hips". I had repeated unsuccessful surgery, and I don't think the hospital gave a thought to the rest of my life. Even now, when arranging tests and appointments, some services seem surprised that I work. I am...

  • After knee replacement surgery, a physio asked me what goals I wanted to set for the next stage of rehab. Initially I wasn't sure what he meant. Physio during my childhood was "done to me" and often wasn't successful, so I wasn't used to being involved. However, once I was, and the exercises began to mean something to me, it was a bit of a lightbulb moment. I...

  • Desperate need for navigation and explanation of the social care system. Resourcing means this probably has to include honest information about who pays for what, as much as I hate the fact that some social care for elderly people has to be paid for. This is the reality we have and people need clear information about what that means.

  • For me, the frsutrations depend on the perspective. For myself, delays in treatment have been an issue. Also, I have a rare gentic disease and arthritis at a much younger age than most and this is a cause of disbelief for some health professionals. From the perspective of having been a carer for my mother with dementia, the sheer battle carers have to get any...

  • Doing the quiz was an eye-opener, even though I was carer for my mother until her death from mixed dementia. The needs of a growing elderly population, especially those deemed "social care" need to be carefully considered for our and future generations.

  • This is a really good introduction. I have worked in the NHS for many years, and I think the challenge will be, post-COVID, to ensure the focus remains on personalisation, and we don;t lose any ground during the changes to CCGs/ICSs etc as these become statutory bodies. I am really encouraged that NHS England is prioritising personalisation becuae I know from...

  • King's Fund website has quite a good animation on the health and care system. I don't think i can post a link here though

  • I think, until you are in the same situation as Mitchell and his family, you just don't realise the impact and limits of "one size fits all" support and the vital importance of support that works for you and your family. What struck me, is how hard Mitchell's family had to work to achieve care that worked for them. I hope this becomes easier for other families...

  • I was born at the end of the sixties and both myself and my Mum spent a lot of time in hospital. At that time, there was no sense of choice or personalistation for my care and I am really glad to see it now. Living with a chronic condition menas you need to take responsibility for your own health and wellbeing, which is very hard if a lot of treatment is "done...

  • When my Mum had to go into a care home, we had a lot of mis-information about dementia, care home fees and care. I think being more confident about personalised care, even more important when you have to make decisions for someone else, helps you to be proactive in finding the information you need and, sadly, in some cases fighting your corner.

  • I am an NHS Manager thinking about a career change, in the NHS. I also have experience of managing a chronic condition and being a carer for elderly relatives. Too often in the past health services have failed to really learn from the experiences of those who use them. I hope doing this course will help me to support change in this area.

  • Our, very experienced PMO lead says she always learns much more from what went wrong than what went right. We assume that we don't want to talk about mistakes, but that is the way we learn. Discussions like these need to be undertaken in a no-blame environment, using something like an after-action review

  • For the village shop, I think its about continuing to ensure that it does what it was set up to do, in the long term. With the event, once the event is over, it is about taking that learning from evaluation into the next event.

  • It is great to have the templates to refer back to but I also enjoyed the human side of meetings and working with team members covered this week.

  • People having side conversations -
    I think there are a few issues here. An organised meeting, with an agenda, covering all the important points and kept to time, should not have or need to have side conversations. Depending on the situation, I think the project manager needs to ask the participants to have one conversation at a time, making sure that...

  • Helen Spence made a comment

    I think if you had a regular (say weekly) project meeting, that is probably a good time to update on milestones, though it will vary from project to project and on the level of variance.

  • And, I think from our perspective, in the NHS, we need to know at least a little about other projects - are they over running, has the scope changed? So that we understand (though we may not be able to influence) the overall burden on staff that we are trying to manage within our project.

  • Probably areas where project deliverables are slipping (e.g. we always have a great demand for data developers) and you haven;t heard from that team member. Checking in with them whilst walking the project allows you to mitigate risks.

  • Communication is key, and it is interesting at the moment, I am working on a few projects and the communication has changed, as it all has to be on teams, remotely. It works but I do find some conversations are harder when not face to face and overseeing the work of others can be tricky when we arent and wont be in the same place for many months yet.

  • I think the role can change a bit, though hopefully not much otherwise maybe more planning was required.
    I think then it is about facilitating input from others and overseeing the outputs and constraints - time, budget etc.
    In the NHS, budgets and finances are always tight so not having as much of a resource (whether someones time or a thing) can be an...

  • This was interesting as a big risk in my project would be if we could not afford the software for knowledge management. Although we would want to get agreement in principle for this early on. NHS budgets change all the time so good to think about these sort of risks

  • I probably need a bit nore time to get my head around Gantt charts, but found the layout helpful

  • I hadn't done this before so initially found the powerpoint hierachy easier to use, but can see that for large projects excel is much more functional, though I need to improve my Excel skills.

  • Helen Spence made a comment

    This has been good, but as I am balancing it with WFH I have yet to complete the WBS chart and spreadsheet which I hope to do this weekend.
    Very interesting and the planning stages help to avoid many project pitfalls

  • I think that in the space example, he references the public as a stakeholder, and as far as I can see, they will need communications on a very different level than say, experts on the project.
    I work in an Analytics department and one of my challenges is writing case studies about our work that are understandable to non-specialists. Even more important with...

  • In the NHS, where I work, change is a given. Often widespread change of policy or priority and it is hard to stop these things derailing your project. I think you have to be flexible, and prepared for the unexpected.

  • The scope of the project is to develop an online platform, for our Analytics department to store documents using knowledge management techniques. The project will cover what we want to achieve form online knowledge management, which platform we will use, who will use it and how the knowledge will be arranged, maintained and updated.

  • Yes, the issue about jobs being interconnected was highlighted in the video

  • That is interesting what you say about clearly defined milestones, helps to reduce the risk

  • It is, as everyone is saying, a complex project, so high there, medium uncertainty I think and pace low. Interestingly I am guessing funding is a considerable risk given the every high necessary levels of expenditure

  • I think the comment about working with volunteers was interesting. People volunteer for a range of reasons and these dont always match the project expectations.
    I also thought the comment about the expectations of those working with you was interesting as well

  • Project - putting learning materials online for easy access.
    On the plus side - this made things easier to find and ensured everyone cold benefit from learning.

    On the negative side - lots of discussion and disagreement about the platform we should use delayed the project and affected uptake.
    Consequence - the project took longer and was not as effective...

  • I like the idea here of elements or constraints, within a project that are linked. In the NHS, where I work, resources and budgets are constrained so we are always thinking about the best use of resource and value for money

  • Hi everyone. I am Helen I am an Evidence Manager in the NHS. I have dome some project management but wanted to get further theoretical experience whilst working from home during COVID. Looking forward to getting to know everyone.