Referrals change lives
Itís time for your regular appointment at your local High street optician. Each year you receive a reminder letter and you go along feeling relaxed and ready to enjoy the rest of your day after your appointment is over. Thousands of people do this every day and many thousands do come away feeling happy and relieved and go on to shop or see a friend, putting the appointment behind them for another six or twelve months.
But what about those who come away feeling worried?
During the various tests you undergo, your optometrist has noticed something is not quite as it should be. He looks at your notes and the results of the tests and informs you that there is something wrong or in need of further investigation. Of course, he will inform you with professional calm and explain the facts so that you are completely aware of what might be a problem for you long term. He will explain how you need to get a full diagnosis from a specialist to ascertain what further long-term effects there might be and any possible remedial corrective solutions.
So far, so good. But youíre at the early stages of what might be a longer journey than you anticipated. You need more than just to be given the straightforward facts, much more. It is searching for this Ďmuch moreí that can present a major part of the problem, leaving you at best, baffled and at worst, confused, anxious and afraid.
Itís all about referrals
The optometrist has referred you to an ophthalmologist at a local hospital eye service department for further diagnosis. The referral letter duly arrives, either given to you by hand or you may receive an electronic referral to the hospital eye service, popping into your Inbox.
The immediate feeling that most probably grips you at this point is a genuine fear for your future. According to each person, this may encompass any number of areas. Thoughts run through your head about whether you will have to give up driving or if, and how, your work might be affected, setting you off worrying about income and possible provision for a family.
There is your daily lifestyle to think about too, your leisure activities, sport, any holidays you may have booked, and how your partner or family may be affected. Your other immediate thought will be about possible further deterioration of your eye sight, if this is going to be life-changing and how you are going to cope.
When you eventually go to the hospital and get the diagnosis from the ophthalmologist for your eye condition, the worries donít stop. They appear endless, worse than the not knowing, giving rise to panic - and no-one is there to help support you through this. Everyone is very kind and factual and telling you not to worry but this offers little or no help. You are worried.
You may be in shock. Overnight your life has changed, or it may be about to, and you have no real idea what the future holds. It is an extremely emotionally upsetting time when you receive such a diagnosis as deterioration of eyesight. Life can seem as if it has ground to a halt.
Yet there is help at hand. You can surround yourself with people who not only care but can support you through the turmoil and distress. There are people who understand the predicament you are in, or facing, and will help you to see that life with an eye condition such as limited vision, however bad, does not mean life coming to an end. There is support. Of course, it isnít always going to be jolly and fun-filled, but the right people can help you to see that you may be about to embrace a whole new and different world and that you can do this in a positive light.
Meeting different people, making new friends, finding new activities to enjoy, experiencing a fresh learning curve. In other words, there are people who can help you to see the pathway ahead as a robust challenge rather than a downhill path to oblivion. After all, a rolling stone gathers no moss. Many hospital eye services have an Eye Clinic Liaison Officer (ECLO) on hand to provide emotional and practical advice, referring you on for support you may require, such as, sight loss charities or social services.
This is so vitally important. It is essential to keep your spirit alive with fresh, positive energy and prevent you suffering mental illness such as depression, panic attacks and anxiety, all of which are energy-depleting.
The help you need may well be sitting on your doorstep in the form of local sensory services or sight loss charities. Yet no one may have referred you to these services. A referral to these services can change a personís life; it can have a huge impact on how they cope with their eye condition or loss of vision, even if only partial loss. piece of advice that may just help you.
As it happens, there is frequent talk about development of a government inspired, integrated care system which aims to link health and social services. It is of paramount importance that this happens with maximum effect for the benefit of those patients who are experiencing the beginning of their sight loss journey. A time of sudden disruption, instability and turbulence in their lives can be made so much easier with the right support and this support doesnít need to be complex.
The term currently being used is Ďintegrated careí which describes the process of making it easier for NHS health professionals, as well as social care workers who are part of council-led services, to work more closely and effectively together.
Integrating health and social care services in this way seems eminently sensible. It also means that where people need support and treatment for several different conditions, they could receive this care from several different doctors, social care staff and specialists. In the same way, those patients suddenly facing sight loss or low vision can more easily be directed on referral to the right support systems and be helped through the navigation of this.
How much less stressful would this make life for those already suffering the rampant feeling of doom and gloom at the onset of sudden low vision. Patients who have been given a diagnosis of worsening sight loss or impaired vision, at present, feel like they have been cast out into the wilderness, alone. This cannot be right and can so easily be rectified.
The problem at present is that whilst the various services are in place to access, it is largely up to you to find them. This can be a trial and if you are already under stress from learning of a diagnosis that may affect your wellbeing, relationships and usual pattern of life, the extra strain can be severe. Soon after your initial diagnosis, you begin to discover that health and social care is not only delivered by different organisations but that they work separately.
Lost in the darkness
You may think this is surmountable and all you need is the support to understand where they are located and how you access them, but the wider problem is that patients then find themselves having to repeat the same information to different doctors, specialists or care workers. This is immensely frustrating, given that you are already floundering around, trying to access what you need to help you to live a normal life and adapt to change. Youíre in the dark and itís getting darker.
The defining sentiment that is required is to put people and their needs or goals at the epicentre of a network of healthcare professionals. These individuals, each from their various professional branches of health and wellbeing, whether for optical care, kidney, heart, liver malfunction or whatever, need to work as one unified team with a streamlined approach. The system also needs to work smoothly with the focus firmly on the patient and supporting them in a time of need.
In this way, it is the people who require the extra care who not only lead the way but have greater control over their lives. Instead of feeling side-lined, struggling to make endless phone calls, writing letters and making wasted, often out-of-town journeys, they can be in the driving position, reassured from the outset that help is easily accessible and readily available.
Involvement is the key to helping people feel better about their condition and about their prospects, and possibly a change of lifestyle, to accommodate a new diagnosis. The impact of being left alone, not knowing who or where to turn to can be immensely draining and lead some to virtually give up. This cannot, and must not, be allowed to happen.
With an integrated approach, lives can be enriched, and a highly fulfilling and happy lifestyle achieved, whether in work, sport, family or social relationships or all of these.
Come on a journey
From initial diagnosis to fruition of a contented, well-supported life, is a journey. It will require a level of patience and enlightenment; this is only to be expected but it should not mean enduring headache and trauma whilst you fumble about trying to reach and sustain a comfortable existence, full of achievement and pleasure.
With a journey of involvement from the very beginning, the vision of this better life is no longer just a dot on an endless stretch to a distant horizon that you never reach.
It should be a stretching out of hands to enable and make the vision happen, and only a few steps away. It should offer the chance for each patient to help themselves, knowing they only need to lean on an existing, firm scaffold of support already in place, as opposed to having to construct the scaffold from broken bits of things they scrabble around and find themselves.
Offering patients access to services that are outside the NHS, such as local sight loss charities helps to widen the support on offer and creates less dependency on the NHS and greater independence for individuals. It means you can lead a full and varied life and remain actively engaged in local community events or affairs.
By Daniel Williams, Man on a Mission with Low Vision
Visualise Training and Consultancy have developed an innovative resource pack making it easier to refer patients to sight loss services.
Download your free copy here
This article is part of a group of Clinical Briefings written by Visualise-Training & Consultancy
Other Links are:
The Business Case for Low Vision
Cuts to Low Vision Services
Keeping abreast of assistive services
Supporting Low Vision Patients who can no longer drive
My Guide Dog in his shining armour
Seven ways to make Low Vision Services pay
Making Optical Services available to Low Vision Patients.
Sight Loss shouldn't mean Job Loss
Disempowered at the Eye Clinic
What more can be done for Lucy?