NHS Continuing Care

For some people with narcolepsy the symptoms are so severe that they need regular medical support. This could be in the home environment or if you are living by yourself. NHS Continuing Care is the name given to a package of services and funding for long term care which is paid for by the NHS for people outside hospital with ongoing health needs. Anyone assessed as requiring a certain level of care need can get NHS continuing healthcare. It is not dependent on a particular disease, diagnosis or condition, nor on who provides the care or where that care is provided. NHs continuing care has little to no effect on social benefits that you may be on such as DLA or ESA.

On April 1st 2010 a new National Framework ”Guidance for NHS Continuing Care” was introduced in England and with it a new Decision Support Tool to try and fairly assess people’s entitlement to free continuing care through the National Health Service. If your care needs are already being formally reviewed on a regular basis, this new toolkit will now take the place of other methods to decide the support you need.

The Primary Care Trust (PCT) is responsible for deciding your eligibility. Not everyone who has ongoing health needs is likely to qualify for free NHS care funding, but if you are struggling to cope then you need to be assessed. A form is available from the GP and/or your PCT to request an assessment and you, or someone acting on your behalf will also be required to fill out an assessment form which explains why you are applying.

You will then go through a preliminary assessment with either a GP or Nurse and Social Worker. They are looking at four areas, under the acronym NICU; Nature, Intensity, Complexity and Unpredictability.

Nature is the type of condition or treatment required and its “quality” and quantity.
Intensity is when one or more needs are so severe that they require regular support
Complexity looks at symptoms that interact, making them difficult to manage or control
Unpredictability assesses changes in the condition that are difficult to manage

There can be two outcomes; you are assessed to be in need or you may need further assessment. If they decide you have an obvious need, the care package will be agreed then. If you are unsuccessful in your first assessment you will be required to attend a second assessment with three professionals.

They will also be looking at 10 areas within the above to measure something called a degree of need.
Behaviour
Cognition
Psychological
Communication
Mobility
Nutrition
Continence
Breathing
Altered states of consciousness
Drug therapies and medication

The full assessment will be a comprehensive assessment of your physical, mental and psychological and emotional needs. This assessment will involve contributions from all of the health and social care professionals involved in your care (the multi-disciplinary team), to build an overall picture of your needs. You will be facing a team of two social workers and one medical specialist. The medical specialist usually fills out the response form.

First point to make; a three to one ratio in a meeting can be quite intimidating. Always, ask before an assessment who will be present. You are entitled to know their names and why they are involved. Then always, always ask if you are allowed a supporter to be present during the meeting as you feel the three to one format daunting. If you are allowed support, ask for the meeting to be scheduled at a time that is good for you and your supporter. If you are not allowed a supporter ask why!

There are 11 questions (at least) that you will be asked to respond to relating to those three sections (physical, psychological and emotional needs) and three columns for answers; A, B and C. To get the support you will need to have either 2As or 1A and 4Bs or 5Bs.

They should have asked for your permission to contact all your health and social care professionals to obtain an assessment of your condition. If they have not done this, before you start the assessment you must ask IF they have requested contributions from your health and social care professionals. IF they have not taken reports you can ask that the assessment is halted until such reports have been given and you have received copies of the reports. IF they have taken reports without your agreement you should register a complaint with them and ask for the assessment to be halted until you have viewed the reports. You are entitled to see copies of any paperwork about you that comes from your healthcare professionals. Not only is it natural justice it’s in the NHS Constitution.

First question should be on behaviour, and in particular “challenging” behaviour. This is not really a factor in narcolepsy for most people; but some do have strange behaviour that could be considered challenging after an EDS or cataplexy attack. Depending on your condition you may well score a B or C on this.

You will be asked at least one question on cognitive impairment; you should mention that your narcolepsy and cataplexy does affect your ability to think “straight” some times. That it does create problems with your memory, particularly short term memory loss after a cataplectic attack, if that is the case. You should stress that you require some supervision and assistance for basic care needs. If you have a volatile level of EDS and Cataplexy you must have support when bathing and it is helpful to have support with dressing and laundry issues and this should be mentioned. You should say that without this support you could not complete daily hygiene tasks without putting yourself at risk, if that is the case. This is also the point to mention automatic behaviour if you suffer from it. You should also point out that during your EDS and Cataplexy you do loose awareness and very basic risks, such as falling or setting fire to your home become possible.

This should get you a B

Psychological and emotional needs are considered and here they want to see that these needs are not having an impact on your health and well being. You should talk about your mood disturbances and your anxiety at sleeping, if this is a problem. Explain the hypnagogic hallucinations and sleep paralysis. If these are having an increased impact on your mental and physical health, say so. Explain that cataplexy is caused by emotional changes and you are frightened to go out for a walk by yourself because if you here a sudden noise (car breaks or a door shutting) it could cause a cataplexy attack. Explain that your social life is very poor because you can’t even go to the cinema as intense emotions, fear, laughter etc can trigger an attack. Without having someone present to support you, you would have to stay indoors all the time, making you unwilling and unable to see friends or relatives.

That should get you a B

Communication. Most people with narcolepsy can usually communicate well. However if you sometimes get your words mixed up, especially after either an EDS or Cataplexy attack, say so and explain in plain language how long it takes to recover. If it takes five to ten minutes to regain all your abilities, let them know that.

Even so, this is probably a C answer

The mobility question can be useful for people with narcolepsy, particularly if it isn’t well controlled. If that is the case then the following needs to be stressed. Are you unable to walk consistently unaided? Does the EDS means you constantly need to stop and rest otherwise you would fall down or be seen to sleep walk which would be dangerous for you and those around you? When you have your cataplexy are you at a very high risk of falling as you have no muscle tone in your legs and however much you might want to walk, you can’t? In fact when having an attack not only are you unable to bear your own weight but you can’t help people who are trying to help you sit down or position you properly. You are completely “out of it” which is not only scary for you but dangerous. Are you constantly concerned about the damage you might do to yourself or your carers.? If you have had a falls risk assessment mention the positive points of that - if not say you have requested a falls risk assessment (and do so) because you are so concerned about the risk of falling while having an attack. Again mention automatic behaviour and how it can be a risk when walking by yourself or making food.

This will get you a B and possibly an A

There will be a question on nutrition and this could be one of the keys. You must be able to adequately take food and drink by mouth and be able to eat a meal within half an hour. If you are like most people with narcolepsy you need to start by explaining you can’t cook food unaided. The possibility of falling asleep or having cataplexy is such that you could burn your home down so must be constantly supervised while heating food. Do you find it difficult to shop for food and also to plan eating? Do you need help in being told when and what to eat? All narcoleptics have a falling asleep in the baked beans story and this is where yours could help. You need to explain that eating food as a narcoleptic takes a great deal of time; it is common to fall asleep while eating and you need someone present to make sure you eat. After an attack you are quite confused and this often means you stop eating before finishing a meal or just forget about it altogether. You must have support for your nutrition otherwise your general health might suffer.

This should get you a B, perhaps an A

There will be a question on continence; if you don’t have a problem say so. If you do, and some people with narcolepsy do have a problem tell them.

Most narcoleptics would score a C here

There will be questions about skin integrity as they are concerned about pressure sores. If you have a problem say so, if not say so. Most people with narcolepsy will not.

Most narcoleptics would score a C here

There will be a question about breathing and shortness of breath. If you suffer from sleep paralysis explain how this can make it feel like you are unable to breath. Explain that these episodes of breathlessness do not respond to standard medication and that they limit daily activities in two ways. A daily activity is sleeping! Unfortunately sleep paralysis and hypnagogic hallucinations mean that your sleep is significantly disrupted and you are surviving on three hours sleep a night or less. (If this is the case) You should also point out that this lack of sleep also has an effect on your day time life.

You might get a B for this, but most report it becomes a C answer

There will be a question on drug therapy and symptom control. If your symptoms are well managed and you have no side effects you will get a C answer and be one of 10% of people with narcolepsy and why did you bother applying for the assessment!

If you have other symptoms which have a moderate effect on your life or on the provision of care you will score either an A or a B. I would mention all the side effects the drugs cause and you experience. Do you have palpitations from provigil or skin spots, loss of muscle tone, feeling of sickness, disorientation and all the other problems members notice? Make a list of all your side effects and mention them, explaining how this effects your life. You must point out here that your condition fluctuates greatly and some days you are worse than others. Even if you are able to maintain your medication regime sometimes the bad days have a severe impact on your life and you fear for your own safety both physically and mentally. You also need to say (if it’s true) that the symptom control is not great and you do tend to have a fairly predictable pattern of problems at night and during the day. Explain what they are, explain how severe they are and how they impact on your life. If you sometimes get confused and forget to take your medication on time, say so.

This should get you a B answer and possibly an A

There is a question on ASC or altered states of consciousness and again this is important. There are three areas where narcoleptics can claim an altered state of consciousness; EDS, Cataplexy and automatic behaviour. If we take automatic behaviour first, the charity states that 'Automatic Behaviour is an involuntary alteration of consciousness resulting in significantly disrupted awareness or concentration during the hours when the claimant is normally awake and which can prevent the claimant from safely continuing with any activity. “Altered consciousness” means that, although the person is not fully unconscious there is a definite clouding of mental faculties which can result in loss of control of thoughts and actions.' You need to explain that while in this state you need support to prevent harm to yourself and others. You could automatically turn on the gas for instance and not light it or place a pan with nothing in on a hob, or be out walking and cross roads without knowing you were or taking any notice of traffic.
Then we come to cataplexy and here it depends on your type of cataplexy. Most people with cataplexy experience a weakening of muscle tone and a clouding of mental faculties for a few moments. Some however retain all mental faculties and if you fall into that type you must say so. Many members say that they notice automatic behaviour that is triggered by cataplexy and they do experience this clouding most after a cataplectic attack. If that is you, say so.
EDS is of course a reversal of consciousness and as such complies with ASC. You must explain that it is impossible for you to stay awake and is not like normal sleep that can be controlled; EDS can’t be controlled except by medication and even then not well. So you stand more chance of a high score with EDS and Automatic Behaviour than you do with just cataplexy.

This should get you a B and possible an A

5Bs are possible for a narcoleptic as are 4Bs and an A; though 2As are unusual it is not impossible

The tests start as soon as you enter the building. If you can, have someone to come with you even if it’s just as far as the waiting room. Useful if you need help to get out of your chair as you go into the room. Also explain that you might have either an EDS or cataplectic attack during the interview, even though you have taken your medication. Tell them if that happens what you want them to do and make sure they understand that. Ask them if they understand your instructions.

Think about what effects the condition has on you and write them down. Think about things that have happened to you that can fit into one of the areas above and write them down. Write these prompts down and take them all with you. Have three pages – one for mobility questions, one for nutrition and one for behaviour. Explain that you have done this because when you are stressed you forget things and you want to provide the most honest answers possible for the meeting. Careful what you write as they may ask for a copy – which is fine. In fact you might want to offer them a copy of your notes.

Final point, if you don’t understand a question then ask them to repeat it. If you still don’t understand a question ask them if this is a mobility, nutrition or behaviour question and then go to the relevant page for your prompts.

The completed tool is not meant to determine eligibility for Continuous NHS care funding, but to support the process of establishing a primary health need. However the decision support notes do say that “A clear recommendation of eligibility should be made if there is a total of two or more incidences of identified severe needs across all domains.” Or if ”One domain records as severe, together with needs in a number of other domains; or a number of domains with high and / or moderate needs” 2As, 4Bs and an A or 5Bs.

If your assessment says that you don’t qualify for NHS continuing healthcare and you don’t agree with this, you can take this up with the healthcare professionals who are working with you. If you prefer, you can seek help from the Patient Advice and Liaison Service (PALS), which can be contacted through your primary care trust or NHS trust. If you remain dissatisfied with the decision, you may have a ‘right to a review’ by an independent panel.