Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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It’s a lottery, even in the same postcode!

Today, with kind permission, we reproduce a post written by Chris Lewis a good friend of our Cancer, Older People and Advocacy work and first published on his own blog recently:

 

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The work that I do in cancer support has changed dramatically over the years, and I have had to adjust with the increase of demand on my time. My speaking engagements and charity take a bulk of my time now, with writing filling any gaps. But one thing I was determined to continue with is my monthly prostate group facilitation, which I have been doing now for 8 years. This is done at my local cancer centre and we have a group of approximately 30, with new members every month. We have professionals from the local community as guest speakers and everyone shares their experiences to try and improve the offer for patients coming into the system now.Our members come from a very local area and in general visit the same few GPs and mainly three hospitals for their treatment.

But what continually shocks me is the mixed messages being brought back to the group. There is a huge amount of experience amongst our members which is why the group is busy. Most have learned to be proactive with their own care because they have to be! post code lottery 3 The guys are a great cross section of prostate treatment with some starting, and others dealing with the side effects of their treatment. This particular cancer has many different options of treatment with different outcomes of course. All have different side effects, and for most people, making a choice is one of the most difficult things they will have to do.

Of course, everyone is affected differently, even when two people have the same disease and treatment which we all know. Treatment is changing rapidly now and even in my time of working with the group, surgery is now being done by robotics, and radiotherapy has become much better targeted to leave less peripheral nerve damage. This is progress of course, along with the more tolerated drugs etc, but why am I not shouting from the roof tops? Simply because our communication is still as poor as ever. With this particular cancer, the treatment decisions can be complex, but it is after treatment where the complications can really begin. Some of the basics of life for men, being embarrassingly difficult. Unable to control accurately when you need to go to the toilet, and wearing nappies, in case of accidents. Erectile dysfunction being also very common for many, after treatment. Having to take hormone therapy for several years, changing your physical appearance, getting regular hot sweats and growing breasts. You can’t begin to imagine those sort of changes can you?

However there are many things around now that can improve life after prostate cancer, but it certainly is a lottery whether you are told about them or not! Many of them are available on the N.H.S, but it seems very few are actually informed what is available. A quick example would be the pads that men wear. People spend a lot in supermarkets buying their own but apparently there is service that delivers them free of charge. Some people know about it and others don’t. The same applies for problem with erectile dysfunction. Tablets, machines, pumps and under the skin valves are all available, but so many people are just not aware much of this exists. It is so strange listening to the group sharing their own experiences. Many looking on in amazement as one mentions a service that nobody else was aware of. Why is this still happening in this day and age?

My initial thought was cost, as that is always one of the first things mentioned, but maybe that is the cynic in me?Post code lottery 1 How can it be that people living in the same area attending few hospitals get very contrasting information? Not being told some of the key elements of what might actually improve their physical and emotional wellbeing. This really shows why it is important for patients to talk to each other and the value of support groups whether online or physical. I have always been proactive with my own treatment and encourage others to be the same. But let’s be honest at the time you are feeling most vulnerable it can be difficult to be ‘pushy.’

We are doing some wonderful things now for people affected by prostate cancer, but what I have learned is that like with most other cancers, it’s the psychological and emotional issues that follow, is where the biggest problems are.Why oh why is it still so ‘hit and miss’ that people get the treatment they require? Whether you have a particular urological nurse or not? If you see a certain Consultant or you don’t?

Communication is still the major obstacle to helping these people. Despite the Internet, and information from many different charities and the health service, it is just not being delivered in the right way. Leaving people to their own devices after they have had traumatic treatment will not help them with their quality of life. Surely after they have been treated, they deserve the best opportunity of returning to as normal a life as can be achieved? It is no longer good enough to think the job has been completed once you leave the hospital. The after effects of many of these treatments can continue for years after, and sometimes for life. We must do more to ensure that each case is looked at individually, how that person lived their life before and what ambitions they may have for after.

In my opinion we must make every effort to improve the quality of life after treatment for people affected by cancer. Not having the services available is one thing but for them to exist and people who need them not to know about them is a disgrace. My experience has shown me that there are still too many ‘cooks’ without real effective collaboration. It can no longer be a matter of luck whether we find what we need!!

This video will help explain some of the issues that people can face.

As always I have share my thoughts and experiences above, and please feel free to share your below. It’s your help that gives me the information I need to ensure positive change can happen.

Chris Lewis: Twitter @christheeagle1 


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Person-centred care and support – a moment of opportunity (Part one) – Martin Routledge

Kath Parson OPAAL’s Chief Executive welcomes our first Guest Blog from Martin Routledge the Director of Coalition for Collaborative Care who examines opportunities coming from the Five Year Forward View:

Today I’m attending the launch of the New Care Models Vanguard Programme and reflecting on what I think will come to be seen as an important period in NHS history. There are real opportunities to build on the great strengths of our NHS while making important shifts which reflect a changing society. But these opportunities will not take themselves.

March saw the announcement of the Vanguard sites and the Integrated Personal Commissioning (IPC) sites. Both national programmes have been broadly welcomed as the start of bringing Simon Stevens’ Five Year Forward View to life. The next few years are likely to determine the shape of health and care services for decades to come as these initiatives point the way for the rest of the system.

My personal experience of similar programmes over the past 15 years tells me that for those of us advocating person-centred care and co-production alongside people using public services, this is a moment of great opportunity but at the same time risk. We must ensure that the opportunity is taken and the risks minimised.

There is a strong tendency for those involved in these kinds of programmes, both centrally and locally, to focus almost exclusively on making changes to organisational systems. Under great pressure to deliver, usually with very difficult timescales, programme leaders are always at risk, whatever their motivations, of focusing on the plumbing and wiring rather than the people. This is not to say, of course, that the structural and system elements – like joined up budgets and integrated organisational and professional arrangements are not vital – they are. It does, however, mean there is a tendency, right from the design stage, not to place person-centred approaches centre stage. They are always there in public pronouncements and stated goals but the link between them and the detailed strategies and plans is often weak.

There are many reasons for this. Co-production with the users of public services in designing and delivering them is still quite novel, perhaps especially in health. The reality is that, for many, it is also still quite counter-cultural and made difficult by our systems. As professionals we feel we are already person-centred and usually try to be so, but the experience of those we serve often tells a different story. Doing this properly takes time – something that high profile programmes often feel they don’t have. This can lead to superficial engagement rather than serious co-production – itself undermining trust and even generating cynicism.

In addition, although the evidence base for achieving person-centred care is increasingly strong, these approaches have not yet gained serious traction in health. For example, only small numbers of people with long-term health conditions report having a care plan they co-developed with their health professionals. Programmes which aid self-management, shared decision making, enable peer support or link people to community supports for well-being are not routinely commissioned at the necessary scale.

So there is a potential nightmare scenario here, of merely shifting deckchairs, rather than realising a serious person-centred win-win.  This win-win will require people using health and social care services, and wider communities, taking responsibility and action for their own health and well-being. It will require strong communities, local third sector organisations and universal services playing a much more significant role. This can’t be achieved just by joining up organisations or integrated teams working in a more co-ordinated way with people. It also requires the release of capacity and energy from people, families and communities, which only comes from them being at the heart of how things are done and through different, supportive uses of professional skills and system resources.

This is where the opportunity lies. We increasingly know what works in generating much more effective relationships between practitioners and people using health and social care services, and so better outcomes. Two key means are personalised care and support planning and what C4CC partner Nesta has called More than Medicine. It is therefore vital that right from the start, the localities involved in NMC and IPC do the following things:

  • Co-produce the design of the local initiative with local people using public services and maintain this co-production at strategic and operational levels of decision making throughout. This requires going well beyond consultation.
  • Ensure the powerful involvement of local voluntary and community sectors and re-direct resources during the period of the programmes to community based support
  • Give at least as much attention (probably more) to the model of care as to the financial and organisational model.
  • From the start, design key elements of person-centred care to be at the heart of the care model – including personalised care and support planning, support for shared decision making and self-management, peer support, community based support for health and well-being and help for people to connect to these.
  • Design evaluation approaches with people using health and social care and incorporate outcomes that are meaningful to people, not just to the systems commissioning them.

Our early involvement with the IPC programme gives us encouragement as the selection of sites and early design of delivery support has prioritised and committed to these things. I have heard Simon Stevens say that three things he wants to see from the programme are:

  • Joined up services and supports
  • More powerful users of health and social care
  • A very different relationship between the NHS and the voluntary and community sector

The sites will be challenged in keeping on this track, and we would advise local people and organisations to do all they can to help them maintain this focus. It will be necessary for those involved with the Vanguards programme to do the same. C4CC will offer as much advice and assistance as possible to the initiatives.

Part two of this blog, What else can we do? will be published on Thursday 30 April 2015.

Martin Routledge is NHS England’s Director of the Coalition of Collaborative Care.martin-routledge He has worked in public services for 33 years, twenty of them spent working mostly for and with local government – often leading integrated  social care and health teams and initiatives and incorporating periods of academic work and teaching in higher education.

From 2002-11, at the Department of Health, Martin played a leading role in the development of the personalisation agenda initially in social care and then extending to health.

From 2008-11 he led the national Department of Health Putting People First initiative.

After leaving the Department Martin led the establishment and was first manager of the Think Local Act Personal national leadership partnership for personalisation and was Head of Operations for the charity In Control – which pioneered personalisation across public services.


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“My cancer treatment” website launched for England

Have you ever wanted to find and compare NHS cancer services in your area?

If so, My Cancer Treatment is a great place to start.  Simply type a postcode, cancer type or hospital into the Find Your Treatment search box.

My Cancer Treatment finds services near you and reports on the quality and standards you can expect from each one.  You can compare results and use these to decide where  to have cancer treatment. Advocates will also be able to use the website to gather information. They will then be able to share that information with the older person affected by cancer they’re supporting to help them make decisions about their treatment and care.

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The information on My Cancer Treatment is collected independently by an NHS quality assurance team, the National Peer Review Programme hosted by NHS England. This programme has nationally assessed NHS cancer services in England since 2001.
Now these assessments are easily available for all patients and the public to access, on an easy to use website. Whether you are newly diagnosed, seeking a second opinion or trying to find some information for someone else, My Cancer Treatment can help.

The key objectives of the National Peer Review Programme focus on improving care for people with cancer and their families by:

  • Ensuring cancer services are as safe as possible
  • Improving the quality and effectiveness of care for cancer patients
  • Improving the patient and carer experience
  • Providing development and learning for all involved
  • Identifying local examples of good practice and encouraging their use nationally, so everyone can have access to the same quality of treatment

The website has been developed with full involvement from a group of cancer patients, to ensure that the tool is easy to use and helpful. Julie Wolfarth and Sian Hallewell, two patient representatives who were involved in the development of the website.

When asked how they think My Cancer Treatment can help, Sian responded; ‘It empowers people, because information is power and sometimes when you receive that diagnosis it’s too hard to go and find this information, if you already know it’s there, then you are one step ahead aren’t you.’

What advice would you give someone who has received a referral and gone onto My Cancer Treatment and is concerned about what they have read?

Julie says ‘sit down with your GP, discuss what you’ve been looking at and say I would like to consider this hospital and this hospital. GP’s would generally refer to hospitals close to where their practise is because that is the traditional route. In a way it’s up to us, as patients and carers to make sure that the treatment we are being offered, is the treatment we are happy to have’. 

Sian also commented that ‘There is nothing to stop you asking the team you’ve been referred to those difficult questions. I would write them down before you go and take someone with you so perhaps they can ask those difficult questions’.

Affected by cancer? Want to make a difference to cancer services?

My Cancer Treatment is looking for new patient and carer representatives to join their team and review NHS cancer services in England. Places are limited and applications close 1st September 2014. Click here to find out how to get involved.

Marie McWilliams, OPAAL